A RETROSPECTIVE REVIEW AND ANALYSE OF THE NEED FOR A HOSPITAL-BASED DENTAL

CARE PROGRAM FOR THE ADULT WITH DISABILITIES

Sarah Hulland HBSc, DDS Diploma in Paediatric Dentistry

This thesis is completed in partial fuifiMment of the Master of Science Degree, at the University of Toronto, Faculty of Dentistry.

O Sarah HuIland, Faculty of Dentistry, University of Toronto 1997

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ABSTRACT

The primary objective of this invesrigation was to generate a medical and dental

profile of the 1384 patients currently attending the Mount Sinai Hospital Dental Program

for Persans with Disabilities. to determine which patients require dental care in that

setting. The secondary objective was to determine the patient's perception on their need

for treatment in a hospital-based dental c h i c by means of a questionnaire sent out to 706

of the patients.

Results indicate that the profile of a patient who is likely to require treatment in a

hospital-based dental prograrn is primarily associated with the presence of moderate to

profound mental retardation (39.5%) andfor moderate to severe behavioural problems

(3 % ) The patients who perceived the need for hospital-based dental care and actually

appear to require this service can be identified by overall poor behaviour (86.7%) and

relative non-cooperation at other medical visits (52.3%).

Mental retardation and behaviour problems are the predominant deteminants of a

person's character profile which may be used to readily screen for patients who require

care in a hospital-based dental program. These niteria can be utilized to select patients

who qualify for care in a hospital-based dentai clinic as well as to refer patients who do

not meet the criteria to appropriate community-based dental facilities.

KEYWORDS: persons with disabilities, hospital-based dental care, behaviour

ACKNOWLEDGEMENTS

To Dr. M. Sigai, 1 would like to thank you for your never ending enthusiasm and integrity, both which Irir excced the cal1 of duty. Professionally and penonally 1 thank you.

To Dr. H. Tenenbaum, Dr. D. Mock and Dr. D. Locker, I'm grateful for d l the t h e and effort you've extended on my behalf to expedite the process of this entire project and thesis writing.

To. Dr. D. Kemy, Dr. D. Johnston and Dr. G.KB. Sandor, 1 thank you for your never ending encouragement and support of my journey through my Paediatric Dental Training.

To my mother and father whose unfaltering support of d l my activities and interests has helped me to aim to be the best I can be.

To my long time friends and roommates, Rob Tsushima, David Yanoshita and Enna Weernick, 1 think 1 may be finished my formal education now, so perhaps we'ii all have t h e to begin the informal component of life's education

To all my friends and family, words are insuficient to thank you for your ongoing support and tolerance as 1 pursued my education goals.

TABLE OF CONTENTS

PAGE

. . .................................................................................................... ABSTRACT I I ... ACKNO WLEDG MENTS ........................................................................ I I I

TABLE OF CONTENTS ....................... ,. ................................................... iv LIST OF FIGURES ........................................................................................ vi . LIST OF TABLES ......................................................................................... WI

........................... a) Introduction ...................................... .. -2 b) Definition of Disabled/Disabilities .......................................................... 4 c) Traditional Dental Care for Disabled ...................................................... -7

......................................................... d) Methods of Dental Care Delivery 11 e) The Role of Hospitals in the Dental Care for Penons with

Disabilities ....................................................................................... 13 f) Profile of the Comrnunity Patients that Potentially Would Utilize

Hospital Facilities ................... ... .... ..,.... .................................. -17 g) Assessrnent of the Literature ................................................................ -20 h) Rationale ......................... .... ........................................................... 22

................... i) Objectives and Hypotheses .... ........................................ -23

METHODS ............................. ... ............................................................. -24 a) General Considerations ........................................................................... -24 b) Hospital Dental Chart Review ................ ..... ....................................... 24 c) Hospital Dental Questionnaire ............................ .... ............................ -25 d) Statistical Analysis .............................................................................. -26

IILX RESULTS .................................................................................................. 27 a) Description of the Patients ....................................................................... 27 b) Analysis of the Relationship Between Characteristics - Main Data-Base ... 50 c) Multivariant Logistic Regression Analysis of Criteria Variables ............. 64 d) Analysis of the Relationship Between Charactenstics - Questionnaire .... 65

IV DISCUSSION .............................................................................................. 77 a) Overview .......................... .. ............................................................... 77 b) Main Data-Base ...................................................................................... 80 c) Questionnaire ....................... .. .......................................................... -90 d) Conclusions ........................................................................................... -94 e) Future Considerations ............................................................................ -96

V APPENDICES a ) Surnrnai-y of the Literature Re~~iew .................................................... 98 b) Categories of Information for the Main Data-Base .................................. 99 c ) Forms Used for Data Entq - Main Data-Base ....................................... 107 d) Mailed Questionnaire ............................................................................. III e) Letter of Esplanation Sent with the Questionnaire ............................... 1 14 f) Consent Form Sent with the Questionnaire ......................................... 115 ç) Summary of Analysis from Results .................................................... 116

LIST OF FIGURES Figure 1 Distribution of the populations by ses . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 9

Figure 4 Distribution of the populations by residence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 0

Figure 3 Distribution of the populations by referrai ............................................. 31

Figure 4 Distribution of the populations by family history .................................... 32

Figure 5 Distribution of the populations by mental retardation ............................. 33

............. Figure 6 Distribution of the populations by general medical conditions I 34

............. Figure 7 Distribution of the populations by generai medical conditions 11 35

.......... Figure 8 Distribution of the populations by general medical conditions III -36

Figure 9 Distribution of the populations by general rnedical conditions related to mobility ........................ ..... .......................................................... 37

Figure 10 Distribution of the populations by diabetes management ......................... 38

Figure 1 1 Distribution of the populations by thyroid problems ............................... 39

........ Figure 1 2 Distribution of the populations by visual and hearing irnpairments -40

Figure 13 Distribution of the populations by seinire disorden .................... .. .... 41

Figure 14 Distribution of the populations by behaviour problems ........................... 42

Figure 1 5 Distribution of the populations by pharmacotherapy ............................... 43

Figure 16 Distribution of the populations by analgesic usage .............................. -44

Figure 1 7 Distribution of the populations by total dental surgical experience ......... 45

Figure 18 Distribution of the populations by location of dental surgeries ............... 46

Figure 19 Distribution of the populations by pnmary dental caregiver ................... 47

Figure 20 Distribution of the populations by types of dental treatment ................... 48

Figure 2 1 Distribution of the populations by dental recall schedule ........................ 49

LIST OF TABLES Table 1 Sex distribution related to dental care under general anaesthesia . . . . . . . . . . . 5 1

Table 2

Table 3

Table 4

Table 5

Table 6

Table 7

Table 8

Table 9

Table 10

Table 11

Table 12

Table 13

Table 14

Table 15

Place of residence related to dental care under general anaesthesia . . . . . . ..52

Relationship of mental retardation with dental treatment under general -- anaesthesia . ......... . .... ............................... ...-. . .-.-.... .... ..... .. ..... . . .. . . . - - . 33

Relationship of combined mental retardation with dental treatment under general anaesthesia . .. . .. . . . .. .. .... .. . . .-. .-. - -. . . -. . - * . . . . --. -. .. .. . -. . . . . .-. . ...- -. . . -54

Relationship of autism with dental treatrnent under general anaesthesia . .55

Relationship of pneumonia with dental treatment under general anaesthesia . . . . . . . . . . . . . . . . . . . . .... . . . . . . . . . .. . . .. . . . . . -. . . . . . . - -. -. . -. . . -. . . - 5 5

Relationship of dysphagia with dental treatment under general anaesthesia . . . . . . . . . . . . . . .. . . . . . . . . . . .. .. . .. . . . . . . . . . . . . - - - -. . -. . -. -. . . . . . .. . . . . -. . . . . . . . -. -. . . - - -56

Relationship of Alzheimer's disease with dental treatment under general anaesthesia . . . . . . . . . . . .. . . . .. . .. . . .. . . ... . . . . . . . . . . . -. - .. . . . . . . . . . . . . ......- -. . -. . . -. 56

Relationship of scoliosis with dental treatment under general anaesthesia . . . . . . . . . . . . . . . . . . . . . . .... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . -. -. -. . -. . . . -. . . . . . . . . . . . -57

Relationship of tuberous sclerosis with dental treatrnent under general anaesthesia ..... . . . . .. . . . ... .. . .. .... . ... . . ... ...... . .. . . ..... .. . ... . .. .. . .... .. .-... . .... . ..- - .- - -. . . -57

Relationship of seinire disorden with dental treatment under general anaesthesia . . . . . . . . . . . . . . . . . . .- .-. . . . . -. . . - .. . . . . -. . -. . -. - - -. - -. . -. . . . . .. .. . -. . . . . . . . . . . . . . . . -58

Relationship of behaviour problems with dental treatment under general anaesthesia . .... . .... ............. .. .. ........ . .. ... . .... ... . ... .. ......... .. . . . . . . . . . . . . . -59

Relationship of paraplegia with dental treatment under general anaesthesia . . . . . . . . . . . . . . . . . . . . .. . . . . . . .. . . . . . . . . . . . . . . . . -. . . . . . . . . . . . . . . . . . . . . . . .. .. . . . . -, . . . . . . - -. . . - -60

Relationship of quadnplegia with dental treatment under general anaesthesia . ... . . . . . .. . . . ... .. ... .. . . . ... . .... . ... ... . . ... .. . . .. -.. . . .... . . ... .. .. ...-. .. . . .. .. . . . - -. . -60

Relationship of use of psychotropic medicztions with dental treatment under general anaesthesia .. . . . .. . . . . . .. . . . . . . . . -. . . . . . . . - -. . . . . .. . .. . . . . .. . . . . . . . . . . . . . . . . . . . . -6 1

vii

Table 16 Relationship of use of seizure medications with dental treatment under seneral anaesthesia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6 2

Table 17 Relationship of limited treatment in the dental clinic with dental treatrnent under ~eneral anaesthesia . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . - 6 3

Table 18 Summary of Logistic Regression Analysis of Criteria Variables .......... - 6 4

Table 19 Affiirmative responses to the questionnaire ........................................... -67

Table 20 Relationship of a history of difficulty finding a community dentist to ....... provide dental care and dental treatrnent under general anaesthesia .68

Table 21 Relationship of a history of difficulty finding a dentist to provide dental care due to non-acceptance of pesons with disabilities with dental

....................... .................... treatrnent under general anaesthesia .... 69

Table 22 Relationship of respondents feeling they receive a better level of dental care in a hospitai setting with dental treatment under general anaesthesia ...................................... .. .69

Table 23 Relationship of respondents feeling they receive a better level of dental care in a private dental office with dental treatment under general anaesthesia .............................................................................................. 70

Table 24 Relationship of respondents feeling they receive an equal level of dental care in either a hospital setting of a private dental office with dental treatment under general anaesthesia ........................ .. ........................ 7 1

Table 25 Relationship of respondents feeling they prefer receiving dental care in a ............ hospital setting with dental treatment under general anaesthesia -72

Table 26 Relationship of respondents feeling they prefer receiving dental care in a ............... private office with dental treatment under general anaesthesia -73

Table 27 Relationship of respondents who choose the hospital dental clinic due to ............ poor behaviour with dental treatment under general anaesthesia .74

Table 28 Relationship of respondents who are cooperative at other medical visits with dental treatment under general anaesthesia ..................................... .75

Table 29 Relationship of respondents who are diffi~cult to assist with routine oral ......................... hygiene with dental treatment under general anaesthesia 76

viii

A RETROSPECTIVE REVIEW AND ANALYSIS OF THE NEED FOR A HOSPITAL-BASED DENTAL

CARE PROGRAM FOR THE ADULT WITH DISABILITIES

La) INTRODLTCTION

Practical experience, during a dental educational program. in an active teachinj

hospital-based dental proçram for persons with disabilities can provide the student'dentisr

with compelling motivation to professionally serve those who are disabled. Problem-

solvinç wirhin such a program demands constant improvisation and an in-depth

understanding of persons with disabilities. Such a dental practice is very demanding as

compared to a routine community clinical practice.

Histoncally many persons with disabilities have been neglected from a dental

perspective. That omission is being progressively rectified by improved professional and

public educational prograrns so that the oral heaith concems of penons with disabilities

are more likely to be addressed. One of the most prevalent reasons for dentists declining

to treat persons with disabilities is the presence of uncooperative patient behaviour

charaaerized by aggression, withdrawal or hyperactivity. Despite inhinsic difficulties

associated with treating some persons with disabilities, current dental and societal

opinion support the view that penons with disabilities should be provided with medical

and dental services which are equivalent to those provided to others in society. How well

do we meet these expectations? What criteria shall we use to measure the service

provided? Given the unique requirements of this group of persons with disabilities, in

what form should we choose to deliver the required dental care?

A reasonable amount of literature is available assessing the care and management

of persons with mental and physical disabilities, however, a significant proportion of

available studies are case reports, or are based on conclusions denved from empirical

evidence. In order to develop appropriate dental care delivery systems more information

is required. Much of the traditional approach to managing both penons with and without

disabilities has been based on time tested treatments derived from experience and

associated observations. This approach lacks the hard evidence which is required by the

patients, social worken, health care professionais, and fùnding agencies responsible for

making decisions regarding the care for penons with disabilities.

This report reviews the currenr literature regarding the delivery of dental care for

the adult person with disabilities. The present investigation specifically dealr with a

representative group of patients at the Mount Sinai Hospital and assessed their dental

treatment requirements. as defined by a history of dental treatment under seneral

anaesthesia. relative <O their medical problems. Finally, a questionnaire was utilized to

determine the current user's perception of their need for a hospital-based prograrn for

persons with disabilities.

b) DEFINITION OF DISABLED/DISABILITIES

The t e m 'handicapped'. when used to describe patients. includes those

individuals with the broadest range of acquired, congenital and hereditary conditions.'

The Worid Health Oganization has defined a handicapped person as "one who over an

appreciabie period is prevented by physical and/or mental conditions frorn full

participation in the normal activities of their age group, including those of a social, 9, 2.3.4 recreational, educational and vocational nature .

The definitions of defect, disability and handicap have been established as

follows: a defect is some imperfection or disorder of the body, intellect a d o r

personality; a disability is a defect which results in some degree of malfunctioning, but

which does not necessarily affect the individual's normal life; a handicap is a disability

which, for a substantial period of time pemanently retards, distorts or othenvise

adversely affects growth, development or adjustment to iife?

The term disabled can be wnsidered in its broadest f o m to include any chronic

or acute; mental, physical, ernotional or medical condition that imposes a limit upon the

individual's ability to perform activities of daily living that are considered normal for

hisher age goup6 In the literature, the majority of definitions for disabled and

handicapped are very broad and vague, with no specific teminology being provided to

clarify the exact meanings of the terms. As a result, throughout this thesis the term

person(s) with disabiIities will be used to denote al1 those individuals with

'handicapping' or 'disabling' conditions, as already defined.

Disabling conditions have varying definitions, that can generally be classified into

three broad categories: mental, physical and medical.'

Mental retardation is the first of the three predominant categones of disabling

conditions. It is generally associated with an encephalopathy with senous deficits in the

cognitive realm,' that results in a state of arrested or incornplete development of mind.'

The overall prevalence of mental retardation is approximately 3 per cent of the

population, with the majonty classified as being mildly retarded (80%). The male tc

female distribution for mental retardation is two to one.'

The definition of mental retardation has three main characteristics: some degee

of cognitive delay; irnpaired adaptive behaviour: and onset before 18 years of age The

cognitive delay is revealed by the intelligence quotient (IQ). with the levels of mental

retardation being roughly correlated with the number of standard drviations below the

mean.'.' It is irnponant to consider that IQ scores have limited utility as they are affected

by disease States; sensory deficits; environmental deprivation; examiner ski11 and

experience; race, sex and age of the child; and behavioural and emotional disorden in the

child and fa~n i l~ . ' ' ~ Taking these limitations into consideration, mental retardation has

been categorized into the following levels, which can be correlated with cognitive

ability :'" IO Level Categow Cornitive Level

69-55 mild educab le mental retardation

54-40 moderate trainable mental retardation

severe severe mental retardation

profound profound mental retardation

These broad categories of cognitive ability can be related to the adaptive behaviour

expected to be attained by individuals classified within each given Thus the

deficits in adaptive behaviour infer that the individual will not possess persona1

independence and social responsibility expected of his age and peer g r ~ u p ' ~

The final critenon of onset before 18 years of age, takes into consideration that

most cases of mental retardation are congenital and prenatal or perinatai; thus the onset

and diagnosis are rarely delayed until after adolescence. The only exceptions to this are

dementia (degenerative central nervous system disease) and postnatally acquired brain

damage (eg. traumatic head injury).'

Persons with physical disabilities are those individuals who have one or more

structural defects that cause normal arnbulation/physical activity to be unusuall y dificult

and sometimes impossible to perform or execute." This category includes those who

suffer from diseases of the joints and bones; muscular diseases; nervous system

disorders; spinal cord injury; spina bifida; multiple sclerosis; traumatic nerve damage;

visual disabili ties: hearinp disabilities and traumatic injuries. As a result of the ph ysical

disabilities rnany of these individuals are rvheelchair bound.'." The physical disabilities

can be categorized. with respect to time, as permanent, transitory or progressive.

Cerebral palsy is the most prevalenr disablinç condition within the broad categor).

of physical disabilities. II is described as a disorder of movement and posture that results

from an insult to, or an anomaly of the immature central nervous system.l3 This irnplies

that it is static in nature and excludes progressive neurologie disorders. The estimated

frequency of cerebral palsy ranges from I to 6 per 1,000 binhs. The tmee most common

forms are spastic (-50%), athetotic (-20%) and rigid (-5%). Those foms characterized

by ataxia, tremor and mixed foms are grouped together and constitute the remaining 25

per cent. l3

Medically disabling conditions have been defined as those medical States where

the person's general health is put further at risk by the manipulations or incidental

infections related to medicalldental treatment.' These individuals are unable to engage in

any substantial gainful activity due to a medically determinable impairment that lasts or

has lasted for a continuous penod of tirne of not less than 12 months.' Medically

disabhg conditions include cardiovascular diseases; cerebrovascular diseases; congenital

diseases; dermatological diseases; disability affecting multiple organs; geriatric

disabilities; metabolic and hormonal diseases; and neoplastic diseases. It has been

estimated that between 4 and 10 percent of the population suffers some form of

compromising rnedical disorder, albeit of a variable degree. ' Although this general classification is quite broad it does not take into

consideration that many disabling conditions can be piaced dong the spectmm of

cognitive, percephial, motor and sensory disabilities, and are frequently found in

combination. '*'O If one considen al1 the chi!dren with developmentaliy disabling

conditions as a separate group, approximately one third have one disability, one third

have two disabilities, and the final third have three or more disabilities. l0 Thus a penon

with a disability may suffer from a combination of mental, physical and medically

disabling conditions.

C) TRADITIONAL DENTAL CARE FOR PERSONS WITH

DIS.4BILITIES

Dental care for persons with disabilities has been catesorized into four historical

periods: ' ' 1. The Age of Neglect from 1885 to the late 1920's

2. The Age of Interest and Emotion from the late 1920's to the mid-1950's

3. The Age of Awareness from the mid-1950's to 1974

4. The Age of Concem and Action from 1975 onward

During the Age of Neglect, there were no specialist dental practitioners trained to

treat children or adults with disabling conditions. l l w L 4 As a whole, there is little known

about the organizational involvement in dentistry for penons with disabilities until 1927

when the American Society for the Promotion of Children's Dentistry was fonned. This

society later became know as the American Society of Dentisûy for Children (ASDC).

An important development occurring dunng this period was the marriage of

paedodontics to dentistry for persons with disabilities; a relationship which continues

today lu4

The Age of Interest and Emotion was characterized by the birth of three

organizations that took interest in persons with disabilities as a major focus; these were

the Dental Guidance Council for Cerebral Palsy, The Amencan Academy of

Paedodomics, and the Academy of Oral Rehabilitation of Handicapped Persons (this later

became known as the Academy of Dentistry for the Handicapped, and is now the

Academy of Dentistry for Persons with Disabilities). These groups helped to produce a

gradua1 awakening of dentistry to the disabled population who had extensive dentai

needs. "*14

The Age of Awareness was characterized by an increase in literature that focused

attention to the dental needs of persow with disabilities. The National Foundation of

Dentistry for the Handicapped (NFDH) was instituted in 1974. This organization helped

to establish liaisons between dental and non-dental groups, with an aim to help provide

oral health care for persons with disabilities. Durinç this period philosophical support for

persons with disabilities brought geriatric and hospital dentisrry into the growing group

of organizations interested in the special needs patient. Overall this period was a time of

rrrowth when philosophies were developed into action, however, there was still a lack of C

total involvement by the dental profession and no clear leader group. Even so, dental

organizations integrated the emotion and humanitarianisrn of the previous decade with a

desire for change in order to improve the oral health care for persons with

disabilities.' '*14

During this period there was also a prevailing philosophy towards the processes

of 'normalization' and 'deinstitutionalization' of persons with disabilities. l 5 In 197 1 the

Williston Report in Ontario was presented to provide recommendations and guidelines

for the phasing down of large institutional residences in favour of srnaller, community

group homes as a means of integrating persons with disabilities into society. l6 By 1972

the Ontario Ministry of Health published a report delineating the need for good dental

care for persons with disabilities. Although the report was quite comprehensive, it was

biased towards promoting dental care strategies for those individuals found in

institutional residences. However, it ciearly demonstrated the need for dental care for

persons with disabilities, a growing awareness of this need and a means by which this

need could be serviced."

In 1973 the Robert Wood Johnson Foundation waj stablished and provided 4.7

million dollars to train dental students to care for r.on-hospitalized persons with

disabilities.18 Eleven dental schools in the United -=es were selected to be funded for a

period of four yean to develop pilot programs to provide needed information regarding

appropriate curricular content and teaching methods for dental students in the care of

persons with disabilities.18 As a result of this program it was determined that providing

training for dental students in both didactic and clinical formats had a positive association

with the comfon and acceptance of dentists to treating persons with disabilities in the

communities. l9

Since 1975, the Age of Concern and Action has seen the development of

programs to improve the dental care delivered to persons with disabilities. More dental

organizations have acknowledged persons with disabilities and begun programs to

improve dental care for this population. The process of normalization as relatrd to alt

activities of daily living has been extended to include dental participation. 6.1 1.12 In

Ontario, the process of ensuring that persons with disabilities received good dental care

was detailed in a report by the Ministry of Health in 1980. This report expanded on the

concepts of dental care originally presented in 1972, but more emphasis was placed on

trying to ensure that those persons with disabilities living in the community were

provided with a means to access dental ~are.*O*~'

The evolution through these historical stages of dental care for persons with

disabilities has enabled the dental profession to appreciate that both an intra- and inter-

disciplinary approach to the management of these patients is essential. One of the

problems encountered in the past has been that the parents, guardians or health advisors,

with whom the patients are in regular contact, have ranked dental care relatively low in

the order of health care priorities, considering it to be an eiective, non-critical ~ervice. '~

This attitude has made it difficult for many patients to procure dental car+ even if they

had the persona1 motivation and interest to seek it. Thus many persons with disabilities

have, and still do suffer from dental negled.

The gradua1 increase in the awareness of the problems of persons with disabilities

stems from the influence of social agencies and from the demands voiced by persons

with disabilities themselves or by their advocates2 The dental profession has

demonstrated a reluctance to treat persons with disabilities. In the United Kingdom it has

been stated that one in 16 persons has some physical, medical or sensory disabling

condition. In the United States it has been estimated that there are alrnost eleven million

special children (1 9.5% of those under 17 years of age) which will represent a significant

proportion of the aging population who will require ongoing dental

Unfortunately, many of these people will expenence some dificulty in maintaining

personai oral hygiene and/or obtaining professional dental

Historically there were limited options available for the delivery of dental care.

Most foms of dental care was provided in the general dental office. The traditional

dental office presented a physical banier to obtaining dental care for many patients with

disabilities. In the 1960's and 1970's mobile dental clinics were developed ro provide

dental care to persons with disabilities, in their place of residence. 26.27.2X This type of

delivery system had the advantase of servinç a larse çeographical area. but i< was

lirnited to only providinç basic dental care with linle or no provisions for laborator).

procedures or complex/cornprehensive care (for example prosthetic and endodontic

treatment) that require repeated appointrnents to ~ o r n ~ l e t e . * ~ In addition, this type of

program was not capable of providing dental care to persons with severe disabling and/or

medically cornprornising conditions.26

d) hlETHODS OF DENTAL CARE DELIVERI'

There are a number of different delivery methods available to provide dental care

to persons with disabilities These can be grouped into four categories of dental care

delivery The first cateyory is the management of patients in the dental offtce with or

without mild conscious sedation. The second category is the management of patients

with invavenous conscious sedation. The third category is the use of deep neuroleptic

sedation in a hospital or special facility. The final category is the use of general

anaesthesia for the management of patients who cannot be treated in either of the above

three ~ a t e ~ o " e s . ~ ~

Ideally, dental treatment rnay be initiated in the community dental clinic, and

subsequently referred to the appropriate clinic, if the patient is uncooperative, for

treatment under general anaesthesia. When pharmacological techniques are considered

for the management of behaviour it is important to acknowledge that potential risks exist

since many persons with disabilities already take daily combinations of dmgs, such as

anticonvulsants and sedatives, to manage their primary medical/behavioural problems.

The interactions of these medications rnay produce paradoxical responses, or there rnay

be signs of tolerance dernonstrated within a farnily of rnedications. As a result of the drug

interactions the use of sedatives to manage poor behaviour in the dental office rnay be

ineffe~tive.~' In addition, successful consious sedation is dependent on an individual's

ability to comprehend the need for the treatrnent, and how the sedation will assist them.

The rnentally challenged patients are not able to comprehend this need and as a result

will be unable to cuoperate. If the patient requires dental treatrnent then deep sedation

or general anaesthesia rnay be the only alternatives to provide quality care in a safe,

predictable and controlled manner. 6293' The person with a disability rnay be

uncooperative for oral care in the dental clinic setting because they are experiencing oral

pain due to caries or gingival infection. Once this problem is resoived, and they are free

from pain, the patient rnay be cooperative for funire Gare in the dental clinic because oral

care will no longer be linked with an aversive stimulus.631

Providing dental care to persons with disabling condirions can be \-eV dificult

and the initial trearment may be based on incomplete clinical and radiographie

information due to the constraints imposed by the patient's uncooperative behaviour. or

by the nature of the disabilitv itself. One of the advantages of the use of general

anaesthesia for the development of long term treatrnent plans for persons with disabilities

lies in the fact that it is possible to fuliy evaiuate the present oral condition ciinicaliy and

radiographically in order to develop appropriate rehabilitative suategies. Since many

prosthetic restorative treatrnents are not viable options for persons with severeiy

disabling conditions, due to non-cornpliance or self-injurious behaviours. it is important

to try to maintain the natural dentition for as long as possible. 29.32 Once under general

anaesthesia it is possible to provide al1 the necessary preventive, restorative and surgical

treatment in one se~sion.'~

Once the initial dental care has been completed under general anaesthesia, it has

been determined that between 4 and 12% of these patients will return for additional

treatment under general anaesthesia within 5 years of their initial session. 3 135.35.3637 ~h~

recognized indications for providing dental care under general anaesthesia, as reported in

the literature by Nunn et al. (1995)- Legault et al. (1972) and Bohaty and Spencer (1992),

are: inability to cooperate, medical conditions. extremes of age, persons with disabilities,

severe anxiety, a great distance to a dentist capable of providing the care, extensive

treatment needs, allergy to local anaesthetic agents, or a combinations of these. 3436.38

e) THE ROLE OF HOSPITALS IN THE DENTAL CARE FOR

PERSONS WITH DISABILITIES

The primary goal of dental care is to ensure good general health. The World

Health Organization defines health as a state of complete physical, mental and social

well-being and not merely the absence of disease or infirmity.' Thus health is a state of

relative equilibrium of body form and function as a result of a dynarnic interplay between

body substance and extemal forces impinging upon it3' Rehabilitation includes ail

mesures aimed at reducing the impact of disabling conditions, and at enabling persons

with disabilities to achieve social integrationM

It has been estimated that approximately 15 per cent of the population of the

United States and the United Kingdom has a physical, medical or sensory disabling

cond i t i~n . '~ .~~ Given this nurnber, it is important to remember that universal access to

health care, including dental services, must be realized if persons with disabilities are to

enjoy the same opporninities as othen in society. 41.42 It is encouraging to see that an

increasing number of persons with disabilities are currently being treated, this can be

attributed in part to an increased utilization of general anaesthesia to provide the

necessary dental treatrnent. 33.34.38 This may also be a reflection of the increasing ability

of the medical comrnunity to care for persons with more severely disabling conditions;

such as hydrocephalus, epilepsy, spinal cord injuries, spina bifida, cerebral palsy, major

cardiac anomalies, kidney dialysis, blood dyscrasias, immunosuppressant diseases,

multiple sclerosis, diabetes and complex endocrine abnomalities; thus increasing their

life expectancy and corresponding long term requirements for health care including

dental There is an interest in trying to maintain or irnprove the quality of life for

persons with disabilities which includes providing required dental care.

Unfortunately, the numbers of persons with disabilities who visit the dentist is

still low (approximately 30 per cent) relative to the total number of persons with

disabilities. This is due in part to the primary care givers believing that nothing is wrong 43.44 dentally. It is apparent that further efforts are necessary from advocacy groups for

persons with disabi lities, and the dental profession to encourage replar denral care

throughout life for persons with disabilities.

One of the problems that man? persons with disabilities encounter is the neea for

assistance; emotional. phvsical and financial. 10 reach the health senrices that are ' 7'.7S 45.4(>.-17.JS.Ji) available."" '-- This may be as simple as providing speciai transpon to an

appointment or as extensive as requiring domiciliary visiting. The necessary assistance

for dental care is also associated with financial restrictions which are imposed by

govemments, where there are strict limitations placed on what treatmenis are permitted

or what will be subsidized. Many of the govemment supponed and managed dental care

progranis for penons with disabilities place a premium on prevention rather than

treatment prograrns, thus limiting the amount of rehabilitative dental care available. 26.48

Paralleled with this is the perception by dentists that there is insufficient financial

compensation for dental services rendered to persons with diçabi l i t ie~.~~ In addition,

many of the public health facilities are concentrated in urban areas, thus further Iimiting

access for care to those residing in more remote Finally, some public health

prograrns have limited their eligibility to children or institutionalized adults with

disabil i t ie~,~~ thus the deinstitutionalized adult with disabilities may have dificulties

accessing dental

The average dental needs of persons with disabilities are usually greater than

those of the non-disabled individual. Persons with disabilities, as a group, present with a

consistently poorer state of oral hygiene, varying levels of periodontal disease, higher

levels of untreated dental caries and relativeiy more extractions than their healthy 4.5.9.12.27.46.51.52.53.54.55.56.57 peers. Superimposed on this increased disease state are the

substantial obstacles encountered by persons with disabilities in obtaining dental services.

Although most persons with disabilities can be treated in the average dental practice,

finding a dentist who is willing and confident enough to manage and treat them. and

getting to that dentist7s office, rnay pose insurnountable difficultie~.~

If the care of persons with disabilities were to be distributed over the entire

general dental profession, the numbers of persons with disabilities per practice would not

create an overwhelming problem. Unfortunately, many general dental practitioners feel

unprepared or inadequately trained to treat persons with disabiltiies.' II has been

estimated that only 35 per cent of cornmunity dentists. depending on their geographical 12.23.20.!S.53.60 location. are willing to accept persons with disabilities inro their practices.

This is in spite of the fact that many undergraduate dental training prograrns provide

experience in the care of penons with disabilities. 26.27 In contrast to these values

originating predominantly from the United Kingdom and the United States. one study

performed in Canada indicated that approximately 72% of dentists will care for penons

with both mental and physical disabilities. In particular, younger practitioners were

more likely to provide the necessary dental treapnent. This is encouraging as it appears

to demonstrate attitudinal changes in dentists which translates into increases in the

avaiiability of dental care to persons with disabilitie~.'~

One of the predominant concems expressed by dentists is the fact that penons

with disabilities may react in an unpredictable rnanner in the dental situation which will

require an irnmediate modified approach/reaction from the dentist. Accordingly, many

dentists are unprepared to provide comprehensive dental care to this population, in

particular to penons with severe disabling conditions. ZUJ6.4l.48$%.6 1.62.63

Another area of concern for dentists is their lack of professional experience with

persons with disabilities despite undergraduate training, a phenomenon ofien related to

the practitioner's penonal comfon level with providing care to persons with

disabilities. 4.48.58 In addition, with the increasing legal concerns associated with the use

of physical r e~ t ra in t s ,~~ and the need for special training and licenses for the use of

conscious ~ e d a t i o n , ~ ~ there is a resistance on the part of general dentists to provide care to

persons with disabi~i t ies .~~ However, if the dental practitioner effectively applies

behaviour management techniques, it has been found that the need for resuaints and

sedation decreases. 66

Although an increasing number of general dentists daim to accept persons with

disabilities into their practices, statistical confirmation of this is minimal. It is unclear

whether these practices provide comprehensive care or if they are merely acting in a

supervisory role to determine when or if these patients require a referral for dental

treatment under general anaesthesia. It is important that persons with disabilities not

have to seek treatment from several dentists before finding one who is prepared to follou

through with the complete comprehensive course of treatment "' .A conibinarion of

primary care being provided by a general dentist. with secondas care being provided in

a hospital dental program, usually in the form of a general anaesthetic. may prove to be

an effective arrangement to help ensure that a greater proportion of persons with

disabilities receive adequate and ongoing dental care.j6

As a result of this lack of participation on the part of general dentists, dental care

for penons with disabilities has generdly fallen to paediatric dentists, some oral

surgeons, dental anaesthetists and other dental professionals who provide oral health care

in the institutional environment. This applies in particular to the treatment of those

individuals with severe andor multiple disabilities, includingz6

1. severe or profound mental retardation

2. chronic, refractory psychiatrie disorders

3. severe neuromuscular disorders

4. sensory impairments

5. orthopedic disorders

The successful provision of dental care to persons with disabilities may be

achieved in a number of different ways including treatment with physical and/or

chemical restraints to control behaviour, or with general anaesthesia, either in a

comrnunity or hospital c l in i~ .~ '

Hospital outpatient dental programs greatly facilitate the management of persons

with disabilities. The comrnunity hospital provides the ready availability of medical

consultation and evaluation and facilities for treatment under general anaesthesia. In

addition, the hospital is capable of providing care to al1 penons with disabilities,

regardless of the severity of their disability, by having the facilities for both outpatient

and inpatient

f) PROFILE OF COMMUNITY PATIENTS THAT WOULD

POTESTIALLY LTILIZE HOSPITAL FACILITIES

Persons with severe disabling conditions and psychiatric disorders have the most 7 77.6- serious difficulties findin a dental practitioner willing to treat them.", In addition,

persons with disabilities tend to be more reluctant or unable to search for a dental

practitioner. Consequently. these individuals receive less dental care than those in the

'normal' group. 2.27.68.69 It has been demonstrated that persons with disabilities receive a

level of restorative treatment that often falls far below that observed in persons without

disabilities.' Studies have determined that persons with disabilities show a consistently

poorer level of oral hygiene; higher untreated disease levels, especially periodontal

disease; and more extractions than their healthy peers, but that caries incidence may not

be higher than normal. 4.9.12.22.27.46.51.52.53.54.55.56.57

The oral cavity plays an important role in life as related to food intake,

communication, emotional expression and social appearance in persons with or without

disabi~ities.~*'~ The oral cavity represents an intersection of several critical funcrions;

ventilation, ingestion, sensation and e ~ ~ r e s s i o n . ~ * ~ ~ For persons with disabilities the oral

cavity may be the centre of their expressive personality in the absence of one or more

other functioning facilities. When teeth are missing, or oral hygiene is inadequate, al1

persons will express or present themselves poorly, however, there is a greater reported

prevalence of these problems in persons with di~abilities.~' Thus, an adequate level of

oral health is required to allow for effective training and improvement in cenain aspects

of oral function, such as eating, speech , and to promote social integration which will

improve the quaiity of life. 2.7 1 .iî,n

Many persons with disabilities have difficulty communicating their needs,

including the identification of a dental problem. It is therefore important that regular

dental a r e be promoted to ensure early detection and treatrnent of d i s e a ~ e . ~ ~ Although

no definitive relationship has been demonstrated between increased caries activity and

recall interval, trends have shown that there is an increased chance of developing caries

after a twelve month recall inter va^.'^ Unfortunately parents of children with disabilities

generally feel that regular presentation to the dentist is not panicularly important unless it 12.23 oram. is to relieve or prevent pain rather than to panicipate in a preventive dental pro,

This attitude prevails as an increasing proportion of the special care population continues

to reside in the family home well into their adulthood.

Historically institutional dental prograrns have been fairly effective in providing

dental care for the residents of their facilities, on both an inpatient and outpatient basis.'"

As the deinstinitionalization process continues, more penons with severe disabling

conditions are being placed into the community setting. It is assumed that al1 the

necessary resources that will be required by these individuals are present within the

community, including dental care. As previously mentioned, many general dentists are

inexperienced, unprepared, or inadequately trained to provide care for penons with

disabilities, in particular for penons with severe disabling conditions. Furthemore, the

few facilities that are willing and capable of providing care for this special population

often present a geographic and possibly a financial barrier to access for dental

Therefore, the present community does not appear to have the necessary resources to

provide required dental care to penons with disabilities, although this needs to be studied

to truly determine the presence or absence of services.

With the continuing movement of the disabled population into the main Stream of

society the behaviour of persons with disabiliùes remains the predominant character

variable which determines whether or not these patients will be treated. 7.57.60

Unfortunately few studies have been undertaken on this community to assess the nature

of the behavioural problems or to develop appropriate behaviour rating systems.' Those

rating scales that do exist generally employ a measure of oven behaviour, thus not

determining the effed of dental anxiety on those individuals characterized as being

anxious cooperators. There is also no consideration given to the idea that the outward

expression of negative behaviour may be a reflection of the persons inability to cope with

that situation. 7m.n .78

Whether the rating scale uses a graphic or a visual analogue system, a degree of

bias is present. Consequently there still does not exist a scale that effectively and

consistently rates behaviour. Compounding this problem for studies trying to assess the

behaviour of aduits with disabilities. is the tendency to 'borrow' from studies perfomed 75.7o.77.73

on -normal' paediatric populations. which are an unacceptable match. Despite

the lack of specific supporting literature. the ovenvhelminç conclusions derived from the

existing studies is that with tirne and the use of proper behaviour modification modalities

( e . tell-show-do, positive reinforcement and time strucniring) most of this special 76.77 population can eventually receive dental care in a conventional setting.

It has been proposed that if sufficient rime and manpower were available for

regular treatment in the dental operatory, general anaesthesia would be required for as

few as 5 per cent of al1 persons with mental disabilities. 28.79.8G In addition, if a dentist has

an affiliation with a hospital, there is an increased likelihood that more persons with

disabilities will be treated in that practice as more treatment modality options are

availab le, in pmicular, the option for general anaesthesia in the hospital. '' A dental care program which offers care to persons with disabilities, in particular

persons with severe disabling conditions, should have the following cornponents: 14.26.82

1. ready availability of medical support

2. the provision for care under generai anaesthesia

3. liaison with referral sources (medical, social services, dental)

4. an understanding of the inherent inefficiencies and inadequacies found in

public clinics

5. adequate fûnding for direct dental costs and indirect costs such as

medicaUnursing care, transportation, etc.

g) ASSESSMENT OF THE LITERATURE

Althouph there is a reasonable arnount of literature available reyarding the dental

health and care of persons with disabilities. most of the studies have been presented with

inadequate statistical analysis (See Appendix V - A). The majority of studies reviewed

demonstrate the use of generalization based on percentages and trends exhibited by the

particular population in question. One of the problems with this type of reponing is that

the conclusions derived, based on that population, rnay be relevant only to that group,

and cannot be applied to other populations. Thus the conclusions derived from this type

of research have tended towards being empirical in nature.

A problem frequently encountered when trying to critically assess the needs of

the 'disabled' population is the absence of a control population. An ideal control group

would present with the same characteristics as the study population, but no specific

treatment modality would be tested on them. In the case of persons with disabilities, this

would mean dividing a set population into two randomly assigned groups, one that would

receive treatment and one that would not. This approach would provide sorne

conclusions regarding the efficacy of care, but it rnay be unethical to deny basic care that

has been show to promote health in persons without disabilities. One way that

researchen have vied to bypass the need for a control group, has been by the use of

questionnaires and retrospective chart analyses. These study methods are beneficial to

help determine trends of care and the perception of need as well as the actual delivery of

care for the disabled population.

Sigal et al (19881~ presented a study that wmpared persons with disabilities who

had received dental care in a hospital-based dental clinic to those treated under general

anaesthesia. This study indicated that the majority of the patients treated under general

anaesthesia were subsequently followed in the hospital's ambulatory clinic.

Unfomnately, no information was provided to indicate whether the group treated under

general anaesthesia required any further treatment under general anaesthesia. The

studies by Nunn and Murray (19~7)~ ' , MacLaurin et al (1985)'~ and Melville et al

(198 1)*' al1 used a group of persons without disabilities to compare oral health,

perception of access to dental care and dental care delivery between persons with and

without disabilities These studies al1 tried to match as closely as possible the a_re range

and demographic environment between the two groups .As a result the conclusions

reached re-arding the increased incidence of untreated dental caries. increased number of

dental estractions and lower level of periodontal health identified in the population of

persons with disabilities are based on a reasonable assessrnent of these conditions found

in the entire population within a particular geographic region.

Despite the shoncomings in many of the studies, al1 the conclusions indicate that

the disabled population is an underserved group that ha a great need for comprehensive

dental care. This group presents unique challenges to the dental care t e m and requires

adaptations to the traditional mode1 of dental care delivery. As a resuit, there exists a

need for facilities that can provide altemate treatment modalities that are required to

provide necessary dental care to persons with disabilities.

h)

have a

degree

RATIONALE

Persons who attend a hospital-based denral prosram for their required care should

degree of identifiable disability that qualifies them for care in the facility The

of disability should be of such a magnitude that the person will not be able tu

ubtain care in a cornmunity dental c h i c setting because of the rnedical risk involved or

the lack of trained personnel and/or special facilities in the community c h i c which they

require. In this regard, medical emergency personnel or facilities for the provision of

dental care under general anaesthesia may not be available outside of a hospital-based

program.

It is probable that the following factors will be correlated with the need to provide

required dental care in a hospital setting:

i ) moderate to profound degree of mental retardation

ii) moderate to severe behavioural prob lems

iii) past dental care performed under general anaesthesia

i) OBJECTIVES AND HYPOTHESES

Obiectives:

To establish a cornputer-based patient profile of patients currently attending the

Mount Sinai Hospitai Dental Program for Persons with Disabilities which can

then be anaiyzed to determine suitable criteria for patient selection and whether

there was appropriate resource utilization to provide this care.

To determine if the patients have experienced difficulty in obtaining their

required dental care in the community and if they perceived a need to be treated

in a hospital-based dental clinic for persons with disabilities.

To test the accuracy of a self administered questionnaire to produce the same

results as a retrospective chart review from a hospital-based dental program in

terms of developing a profile of a patient who requires this environment to

receive appropnate dental care,

Specific clinical and medical criteria can be developed to define a population of

patients who should be treated in a hospital-based dental program rather than in

community-based private or public dental clinics.

Based on the critena established above, oniy a proportion of the total

population of patients currently attending the existing hospital-based program

achially require care in the facility.

Factors deemed to identify patients who require hospital-based dental care will be

similar or identical to those which identify patients who routinely require the

delivery of their dental care under general anaesthesia.

Penons with disabilities who routinely attend a hospital-based dental program do

so because they have expenenced difficulties obtaining their required care in the

community in the past and they prefer to be treated in a hospital setting.

A self-administered questionnaire cm be used to develop a patient profile similar

to one established from a retrospective chart review.

II. NIETHODS

a) General Considerations

This study has been divided into two segments to simplify assessrnent of the

hypotheses. The two segments are based on information generated from patients

registered with the Mount Sinai Hospital Dental Program for Perçons With Disabilities.

The segments are related to each other by means of the patient's unique hospital

identification num ber.

The proposed study received approval based on scientific merit frorn the Research

Cornmittee within the Faculty of Dentistry, and ethical approvai from die Human

Subjects Review Cornmittee of the University of Toronto.

b) Homital Dental Chart Review

The initial phase of this investigation was to create a standardized questionnaire

of medical and dental information to develop a characteristic profile for each patient

registered with the Mount Sinai Hospital Dental Program for Perçons With Disabilities.

This information was divided into six categories: background information, farniiy

history. medical information, medications, surgical experience and dental information

(see Appendix XXI - B). The information derived for each patient in each of these six

categories was initially entered ont0 a hard copy chart.

The collected data were then transferred into computer generated data-based

fonns developed using the Microsoff Access PrograrnO (Version 2). Each fom

comesponded to the previously delineated general categories of information. (see

Appendix XXI - C). Once the data had been entered and checked for accuracy, the six

forms were merged together using the Mount Sinai Hospital identification number as the

common variable to create one large data-base. This final data-base was then converted

into MicrotabO (Version 1 1.1) for statistical analysis.

The 1,384 hospital dental charts were reviewed by one investigator to standardize

the data collection process. The same investigator entered al1 of the information into the

cornputer and checked the entered information for accuracy. This was performed by

randornlv selecrins seventy-five identification numbers and comparing the information

entered into the cornputer against the informatjon originally generated from the hospital

dental charts

c) Aos~ital Dental Questionnaire

The second phase of this investigation was to develop a questionnaire to be sent

to patients registered with the Mount Sinai Hospital Dental Program for Persons With

Disabilities to determine the patient's perceptions of their need for treatment in a

hospital-based dental prograrn (see Appendix V - D). This questionnaire and return

envelope were sent out to the 750 patients currently registered as patients with the

Director of the Dental Program for Persons With Disabilities. Included with the mailed

questionnaire was a letter of explanation of the present study (see Appendix V - E). A

consent form was also included (see Appendix V - F) to be filled out and returned,

indicating whether or not the patient would like to be included in the present study. The

patients were assured that the collected data would maintain anonymity and

confidentiality. When possible the questionnaire was to be completed by the patient, but

if unable then their guardian, parent or community support worker responded to the

questionnaire in place of the patient and indicated on the consent form who they were.

The forms were prepared for mailing by one investigator, one secretary and one

volunteer. The secretary was responsible for responding to any questions received by

telephone regarding the questionnaire, and would contact the investigaton if any

questions were beyond her ability to answer. Al1 the returned foms were then processed

by one investigator.

The data generated from the retumed questionnaires were entered into a computer

using the EPI INFO (Version 5) software (Centres for Disease Control and Prevention.

Atlanta, Georgia. 30333). Each patient was identified in the data-base by means of their

Mount Sinai Hospital identification number. The data were then converted to Microtabe

(Version 1 1.1) files for statistical analysis. This conversion also pennitîed cornparison

and statistical analysis of the responses generated for the questionnaire in relation to the

rnedical and dental information senerated in the main data-base.

d) Statistical Analvsis

Ail the statistical analyses were underiaken using the MicrotabO (version 1 1.1 )

program. Descriptive statistics were used to calculate the total number and relative

percentages. of individuals contained within any given category. Comparative analysis

between variables was performed using Chi-square analysis and utilizing the P-value to

determine whether the variables had any relationship to each other. To increase

stringency the level of the P-value that was accepted as being representative of variables

being related to each other was determined to be 0.01 rather than the standard 0.05 due to

the large number of variables in the original data base, as well as the large number of

variables that were related to each other.

For those characteristics found to identify which patients should be treated in a

hospital-based dental program, statisticai analyses were performed to identify the odds

ratio for each variable. In addition, logistic regression was applied to these

characteristics to permit descriptive assessrnent of the relationship between the variables.

III. RESULTS

The results are presented in four main sections. a) a description of the patients. b )

analysis of the relationship between characteristics - main data-base. c) logistic

regression of the criteria variables. and d) analysis of the relationship between

characteristics - questionnaire. To simplify the presentation of the results, the descriptive

results obtained from both the main data-base and the questionnaire will be presented

together. Al1 values will be presented rounded to the nearest 0.0 level.

a) DESCRIPTION OF THE PATIENTS

The total number of individuals registered as patients with the Mount Sinai

Hospital Dental Program for Persons with Disabilities was 1384. Of the 750

questionnaires mailed out, 44 were retumed due to incorrect addresses, thus decreasing

the number mailed out to 706. From this a total of 174 were retumed with 13 declining

to participate in the study, 10 failed to provide responses to al1 of the questionnaire, 44

were not found to have a match in the main data-base, and 104 were accepted for

encorporation into the study. The total response rate is 24.6% with 14.7% being

included in the study.

The mean age for the main data-base wss 38.6 years f 16.1 years, with the age

spectrum ranging from 3.1 yean to 96.3 yean. An assessrnent of the age of patients seen

during 1995 and 1996 was performed. There was a total of 605 patients seen during this

two year period with a mean age 34.0 years + 13.4 years. This suggests that the age of

patients being seen has decreased over time. The mean age from the questionnaire

responders was 30.7 years + 10.3 yean, with the age ranging from 3.1 yean to 62.5

years. This indicates a similar age range for the two data bases.

The mean number of visits to the hospital dental program from the main data-

base was 11 -9 visits & 16.0 visits with the median being 6 visits. The mean nurnber of

visits from the questionnaire was 18.9 visits f 20.9 visits, with the median being 11

visits. This suggests that patients who responded to the questionnaire are more regular

attenders of the hospital-based dental program.

The following figures are used to represent the distribution of the patients in both

the main data-base and the questionnaire. with only the positive responses indicated. thus

the represented percentages will not necessarily total to one hundred percent for an'

variable The numbers appearing above the bars indicates the absolute numbers of

individuals in each çroup.

The character profile for both populations was derived from information found in

the main data-base, thus any statistical analyses performed to determine the

representativeness of those characteristics in the questionnaire appeaing to differ from

the main group had to be adjusted to elirninate duplication error. In addition, since the

population sizes were very different, the main data-base was converted into percentage

values to create a more even comparative analysis which would be more representative.

If statistical analysis were perfonned on al1 92 characteristics the P-value would need to

be adjusted to 0.005, a level which increases the risk of expressing random statistical

significance. To keep the P-value at 0.01 statistical analyses were performed only on

those characteristics appearing to Vary between the two data-bases and having an impact

on the developed cntena list. Those analyses which demonstrate no significant

difference will be indicated as NS with significant differences being provided with an

actual value. For those characteristics identified as being statistically relevant for the

developed criteria list an odds ratio has been determined and will be presented.

a) DISTRIBUTION BY SEX

Figure 1 demonstrates the distribution of the populations, from both parts of the

study. as identified by sex. The graphed bars indicate the adjusted percentage of males

and females in each group. The even distribution of sexes in both the questionnaire and

the main data-base indicates similar representation in both.

Figure 1:

11 Main Data Base

b) DISTRIBUTION BY PLACE OF RESIDENCE

Figure 2 demonstrates the distribution of the populations, frorn both parts

of the snidy, as identified by primary place of residence. The graphed bars indicate the

adjusted percentage of location for living on their own, farnily or foster home, group

home, institution and any othemise not identified location. When analyzed there was a

statistical difference (P-value = 0.002) between the groups with family/foster homes

being over represented in the questionnaire population.

Figure 2:

1 Distribution by Place of Residence 1

Main Data Base

c) DISTRIBUTION BY INITIAL REFERRAL

Figure 3 demonstrates the disnibution of the populations, from both pans

of the study, as identified by the identity of the person who initially referred them to the

hospital dental c h i c . The graphed bars indicate the adjusted percentage for being

referred by a dentisf doctor, pnmary caregiver, employer or teacher and any other not

othenvise identified individual. The relatively even distribution of referral source in

both the questionnaire and the main data-base indicates similar representation in both.

Figure 3:

1 Distribution by Initial Referrals 1

d) DISTRIBUTION BY FAMILY HISTOUY

Figure 4 demonstrates the distribution of the populations, from both parts

of the study, as identified by the reponed family medical history. The graphed bars

indicate the adjusted percentage for having a family history of heart disease, bleeding

disorden, diabetes, hypertension, malignant hyperthermia; cancer and developmental

disorden. The relatively even distribution of location in both the questionnaire and the

main data-base indicates similar representation in botb. The information obtained for

this category was limited in the dental chart., so the variations between the two data-

bases may be associated with the low representations in the main data-base.

Figure 4:

1 Distribution by Farnily History 1

1 Questionnaire 1 Main Data Base

e) MEDICAL PROFILE

The followinç 17 figures demonstrate the distribution of the populations. from

both parts of the study, as identified by medical, pharmacological, surgical and dental

profiles. The graphed bars indicate the adjusted percentage for each. The relatively even

distribution of individuals in both the questionnaire and the main data-base indicates

similar representation in both.

(i) Distribution by Mentai Retardation

Figure 5 demonstrates the distribution of the populations by level of mental

impairment (mild, moderate or severe/profound). The relatively even distribution of

level of mental retardation in both the questionnaire and the main data-base indicates

similar representation in both, although the proportion of individuais with moderate

retardation is marginally higher in the questionnaire population. The difference between

these groups was found not to be statistically different (%value = NS).

Figure 5:

(ii) Distribution by General Medical Conditions

Figures 6,7 and 8 demonstrate the distribution of the populations general medical

conditions as indicated on each figure. The relatively even distribution of zeneral

medical conditions in both the questionnaire and the main data-base indicates similar

representation in both. Variations in adjusted percentages do appear but may be

associated with the overali small numbers in the main data-base and even smaller

absolute numbers from the questionnaire. Details of the differences will be provided in

the discussion section of this paper.

Figure 6 demonstrates the distribution of the populations by Down's syndrome,

Cerebral Pdsy, Autism, Muscular Dystrophy, Multiple Sclerosis, Spina Bifida and

Cranio-facial Anomalies. In this graph Down's syndrome appean to be differently

represented between the two populations, but statistical analysis indicates no difference

(P-value = NS).

Figure 6:

1 Distribution by General Medical Conditions (

Figure 7 demonstrates the distribution of the populations by asthma, pneumonia,

dysphagia, Alzheimer's disease and psychosis. The difference between the questionnaire

and main data-base for patients having pneumonia was not statistically significant

(P-vaiue = NS).

Figure 7:

1 DistrÏbution by General Medical Conditions II )

1 Questionnaire 1 0 Main Data Base

Figure 8 demonstrates the distribution of the populations by cerebral vascular

accidents, tuberous sclerosis, malignant hyperthennia, hepatic problems, renal problems

and cancer.

Figure 8:

1 Distribution by General Medical Conditions Ill 1

(iii) Distribution by General Medical Conditions Related to Mobility

Figure 9 dernonstrates the distribution of the populations general medical

conditions related to mobility including paraplegia (which included hemiplegia),

quadnplegia, scoliosis, arthritis and Parkinson's disease. The relatively even distribution

in both the questionnaire and the main data-base indicates similar representation in both.

The differences observed for quadriplegia and scoliosis were found to not be statistically

significant (P-value = NS).

Figure 9:

Distribution by General Medical Conditions Related to Mobility I

1 Ei;l Questionnaire 1 Main Data Base

(iv) Distribution by Diabetes Management

Figure 10 demonstrates the distribution o f the populations related to the means

by which the diabetes incidence is being managed including diet control, use of oral

hypoglycemic agents and use of insulin. The relatively even distribution in both die

questionnaire and the main data-base indicates similar representation in both, although

the actual numben in both groups are small.

Figure 10:

1 Distribution by Diabetes Management 1

1 Main Data Base 1

(v) Distribution by Thyroid Problerns

Figure 1 1 demonstrates the distribution o f the populations related to rhyroid

fùnction, hypothyroid or hyperthyroid, although no patients in either data-base presented

with a state o f hypenhyroidisrn. The relatively even distribution in both the

questionnaire and the main data-base indicates sirnilar representation in both.

Figure 11:

1 Distribution by Thyroid Problerns 1 1 ~ues t ionna ire l

Main Data Base

(vi) Distribution by Visual and Hearing Impairments

Figure 12 demonstrates the distribution of the populations related to visual and

hearing impairments. The relatively even distribution in both the questionnaire and the

main data-base indicates similar representation in both, although the proportion of

persons with hearing impairments was less reported from the questionnaire. The

difference observed for hearing impairment was not statisticdly significant

(P-value = NS).

Figure 12:

Distribution by Visual and Hearing lmpainents

1 1 1 Main Data Base

(vii) Distribution by Seizure Disorders

Figure 13 demonstrates the distribution of the populations related to seizure

disorders including any othenvise unspecified history of seinires, mildly controlled,

moderate control and uncontrolled seizure disorden. The relatively even distribution in

both the questionnaire and the main data-base indicates similar representation in both.

Figure 13:

1 Distribution by Seizure Disorder 1

1 Questionnaire ] Main Data Base

(viii) Distribution by Behaviour Problems

Figure 14 demonstrates the distribution of the populations related to behavior

problems iricluding mild, moderate and severe behaviours. The relatively even

distribution in both the questionnaire and the main data-base indicates similar

representation in both. This is supported by the fact that there is no statistically

significant difference between the MO groups (P-value = NS).

Figure 14:

(ix) Distribution by Pharmacotherapy

Figures 15 and 16 demonstrate the distribution of populations related to

medications being prescribed. The relatively even distribution of use of medications in

both the questionnaire and the main data-base indicates similar representation in both.

Figure 15 demonstrates the distribution of the populations by use of any

medications, systemic steroids, psychotropic medications, anti-hypertensive medications,

anti-coagulant medications, diuretics, laxatives, seizure medications, muscle relaxants,

hormone therapy, regular use of antibiotics and a history of blood transfusion.

Figure 15: 1 Distribution by Phamacotherapy 1

1 V A Questionnaire 1 Main Data Base

Figure 16 demonstrates the distribution of populations related to the regular use

of analgesics including acetylsalicylic acid, acetaminophen, non-steroidal anti-

inflarnmatory agents, narcotics and any not othenvise specified. It is worthwhile noting

the relatively higher proportion of individuals from the questionnaire indicated as using

narcotics, but this was found to not be statisticaily significant (P-value = NS).

Figure 16:

1 Distribution by Analgesic Usage (

Questionnaire ( Main Data Base 1

(x) Distribution by Surgical Experîence

Figures 17 and 18 demonstrate the distribution of populations related to their total

experience of dental care under general anaesthesia at Mount Sinai Hospital. The

relatively even distribution experience of dental care under general anaesthesia in both

the questionnaire and the main data-base indicates similar representation in both.

Figure 17 demonstrates the distribution of the populations by the proportion of

individuals who have had any dental surgical expenence at Mount Sinai Hospital under

generai anaesthetic.

Figure 17:

Distribution by Total Dental Surgical Experiences at Mount Sinai Hospital

1 1 Main Data Base

Figure 18 demonstrates the distribution of the populations by the proportion of

individuals who have had dental surgical experience at Mount Sinai Hospital in either the

surgical daycare unit or in the main operating room. There was no statistically

significant difference between these groups (P-value = NS).

Figure 18:

Distribution by Total Dental Surgery by Location at Mount Sinai Hospital I

1 V A ~uestionnaire 1 1 Main Data Base 1

(xi) Distribution by Dental Experiences

Figures 19, 20 and 21 demonstrate the distribution of populations related to

experiences in the dental clinic. The relatively even distribution of experiences in the

dental c h i c in both the questionnaire and the main data-base indicates similar

representation in both.

Figure 19 demonstrates the distribution of the populations by identification of the

primary dental caregiver including staff, postgraduate students, interns, hygienists and

undergraduate students. The differences between the groups was not statistically

significant (P-value = NS).

Figure 19:

Distribution by Primary Dental Caregiver '1

[ m Main Data Base 1

Figure 20 demonstrates the distribution of the populations by the types of dental

treatrnenü that had been provided in the dental c h i c including examination,

radiographs, preventive procedures, restorative procedures, endodontic therapy, oral

surgery, prosthodontic procedures, adjunctive periodontal procedures and any other

procedures not otherwise identified.

Figure 20:

Distribution by Dental Treatrnents

uestionnaire Main Data Base

Figure 21 demonstrates the distribution of the populations by the recall schedule

that the patients have been placed on including those not specified, three months, six

months and twelve months. There is no statistical significant difference between these

groups (P-value = NS).

Figure 21:

1 Distribution by Recall Schedule 1

6 1 Main Data Base

b) ANALYSIS OF THE RELATIONSHIP BETWEEN

CHARACTERISTICS - MAIN DATA-BASE

The premise that patients requiring dental care under general anaesthesia were

those who required dental care in a hospital environment was used as a baseline against

which specific medicai and dental profile characteristics were compared. In addition,

the same characteristics were related to each other to try to determine a realistic profile of

those patients who require dental Gare in a hospital environment. In the following section

only the associations between specific variables from the main data-base, as indicated in

the rationale section of this paper, are presented with their relationship to the patient's

history of dental care under general anaesthesia. The remainder of the analyses

performed between the variables are presented in Appendix V-G. Al1 the tables in this

section and Appendix V-G present the results of the Chi-square statisticai analyses

performed to determine the relationship between variables.

For those characteristics found to be important in detennining which patients

require treatment in a hospital-based dental chic, the odds ratio was detemined. These

values are presented as OR = value.

a) SEX DISTRIBUTION RELATED TO DENTAL CARE UNDER GENERAL

ANAESTHESLA

The Chi-square assessrnent of sex distribution with a history of dental care under

general anaesthesia indicates that there is no relationship between these two variables (P-

Value = NS).

Table 1:

Relationship of Sex Distribution with History of Dental Care Under General Anaesthesia

1 Sex 1 Dental Care Under General Anaesthesia 1 Row Totals

Male f emale

Column Totals

No 366 (52.1 1) 354 (51.9%) 720 (52.0%)

Yes 336 (47.9%) 328 (48.1 %) 664 (48.0%)

702 (50.7%) 682 (49.3%) 1384 (100%)

b) RELATIONSHIP OF RESIDENCE WITH DENTAL CARE UNDER

GEX ERAL ANAESTHESIA

The relationship of primary residence with a history of dental care under general

anaesthesia indicates that there is a strong relationship (P-Value < 0.001) between these

two variables. In panicular, living in a group home or institution represents a greater

chance of receiving dental care under general anaesthesia.

Table 2:

Relationship of Primary Residence with History of Dental Care Under General Anaesthesia

- - pp 1 Prirnary Residence 1 Dental Care Under General Anaesthesia 1 Row Totals 1 On Own

Fam ily1Foster Home Group Home

Institution Other

Column Totals Chi-Square = 72.043 DF = 4 P-Value < 0.001

I

256 (1 8.5%) 575 (41.5%) 407 (29.0%) 143 (10.3%) 9 (0.7%)

1 384 (1 00%) 1

1

No 189 (73.8%) 294 (51.1%) 170 (42.4%) 60 (42.0%) 7 (77.8)

720 (52.0%)

Yes 67 (26.2%) 281 (48.9%) 231 (57.6%) 83 (58.0%) 2 (22.2%) 664 (48.0%)

RET.ARDATIOh; WITH DENTAL TREATMENT UNDER GENERAL

ANAESTHESIA

( i ) Mental Retardation

The relarionship between mental retardation and dental treatment under general

anaesthesia is supponed statistically (P-Value < 0.001) with the more severely mentally

retarded individuals having a greater chance of requiring a general anaesthetic to

complete the necessary dental treatrnent. (OR: mild = 1.32; moderate = 4.45;

severeiprofound = 6.7 1 ).

Table 3:

#

Relationship of Mental Retardation with Dental Treatment Under General Anaesthesia

Retardation

No Mild

Moderate SevereIProfound Column Totals

Dental Treatrnent Under General Anaesthesia

No 1 Yes

Row Totals

Chi-square = 168.338

374 (27%) 463 (33.5%) 372 (26.9%) 175 (12.6%) 1384 (1 00%)

m

259 (69.3%) 292 (63.1 %) 125 (33.6%) 44 (25.1 %) 720 (52.0%)

1 15 (30.7%) 171 (36.9%) 247 (66.4%) 131 (74.9%) 664 (48.0%)

( i i ) Corn bined !Vental Retardation

The moderate and severeiprofound categories were corn b ined and then related to

den ta1 trearment under general anaesthesia. lt is demonstrated that there is a rel ationship

between these variables (P-Value < 0.00 1 ) as indicated above.

Table 4:

l Relationship of Combined Mental Retardation with Dental Treatment Under

1 General Anaesthesia

1 Mental Retardation 1 Dental Treatrnent Under General Anaesthesia

t I

I No I Yes

Moderate & SevereIProfound 1 159 (30.9%) 1 378 (69.1 1)

- -

Colurnn Totals 1 720 (52.0%) 664 (48.0%) 1

Chi-square = 164.926

Row Totals

d) RELATIONSHIP OF AUTISM WITH DENTAL TREATMENT UNDER

GENER4L ANAESTHESIA

There is an apparent relationship between autism and dental treatment under

general anaesthesia (P-Value = 0.003) with 65.2% of the autistic patienü at this hospitai

requirins general anaesthesia to complete the necessary dental treatment. (OR = 2.1 1 ).

Table 5:

1 Relationship of Autism with Dental Treatment Under General Anaesthesia I 1 Aut ism 1 Dental Treatment Under General Anaesthesia 1 How Totals 1

I I D

I NO I Yes I 1 m

1 Yes 1 24 (34.8%) 11 . O . O I 1 1 Colmn Totals 720 (52.0%) 1 664 (48.0%) 1 1384(100%) 1

e) RELATIONSHIP OF PNEUMONIA WITa DENTAL TREATMENT UNDER

GENFRAL ANAESTHESIA

There is no apparent relationship between pneumonia and dental treatment under

general anaesthesia (P-Value = NS).

Table 6:

Relationship of Pneumonia with Dental Treatment Under General Anaesthesia

1 Pneumonia 1 Dental Treatment Under General Anaesthesia 1 Row Totals 1 I I No I Yes 1 I

Yes Column Totals

83 (61 .O%) 720 (52.0%0

Chi-sauare = 4.901 I

53 (39.0%) 664 (48.0%)

136 (9.8%) 1 384 (1 00%)

f) RELATIONSHP OF DYSPHAGLA WITH DENT.4L TREATMENT CNDER

There is no apparent relationship behveen dysphaçia and dental treatmenr under

ileneral anaesthesia (P-Vaiue = YS). - Table 7:

Relationship of Dysphagia with Dental Treatment Under General Anaesthesia

g) RELATIONSHIP OF ALZHEIMER'S DISEASE WITH DENTAL

TREATMENT UNDER GENERAL ANAESTHESIA

There is no apparent relationship between Alzheimer's disease and dental

treatment under general anaesthesia (P-Value = NS).

Table 8:

Dysphagia

r

No Yes

Column Totals

I Relationship of Alzheimer's Disease with Dental Treatment Under General Anaesthesia

Alzheimer's Disease

1 Dental Treatrnent Under General Anaesthesial Row Totals 1

Chi-square = 3.843

Row Totals

1300 (93.9%) 84 (6.1 %) 1384 (1 00%)

1

Dental Treatment Under General Anaesthesia

No 685 (52.7%) 35 (41 -7%) 720 (52.0%)

No Yes

Column Totals

Yes 615 (47.3%) 49 (58.3%) 664 (48.0%)

Chi-square =1.16OI

1310 (94.7%) 74 (5.3%) 1384 (1 00%)

No 677 (51.7%) 43 (58.1 %) 720 (52.0%)

Yes 633 (48.3%) 31 (41.9%) 664 (48.0%)

There is an apparent relations hi p between scol iosis and dental treatm ent under

zeneral anaesthesia (P-Value c 0.00 1 ). A laoe percenrage (70.7?/0) of patients with h

scoliosis requirin general anaesthesia to complete the necessary dental treatment. (OR =

2.78).

Tabie 9:

Relationship of Scoliosis with Dental Treatment Under General Anaesthesia

1 Scoliosis 1 Dental Treatment Under General Anaesthesia 1 Row Totals 1 I I No I Yes I I

i) RELATIONSHIP OF TUBEROUS SCLEROSIS WITH DENTAL

TREATMENT UNDER GENERAL ANAESTHESIA

There is no apparent relationship between tuberous sclerosis and dental treatment

under general anaesthesia (P-Value = NS).

Table 10:

No Yes

Column Totals '

I -- - --- - --

Relationship of Tuberous Sclerosis with Dental Treatment Under General Anaesthesia 1

Tube rous 1 Scierosis 1 Dental Treatrnent Under Genera~ Anaesthesia 1 Row Totals 1

Chi-sauare =18.082

I I No I Yes 1 I

1 302 (94.1 %) 82 (5.9%) 1384 (1 00%)

rn

696 (53.5%) 24 (29.3%) 720 (52.0%j

11 cells with expeded counts less than 5.0 1

606 (46.5%) 58 (70.7%) 664 (48.0%)

Yes Colurnn Totals

Chi-sauare = 10.872

4 (40.0%) 720 (52.0%)

6 (60.0%) 664 (48.0%)

1 O (0.7%) 1384 (1 00%)

j ) REL-ATIONSHIP OF SEIZURE DISORDERS WITH DENTAL TREATMEST

UNDER GENER4L ANAESTHESIA

There is an apparent relationship between seizure disorders and dental treatment

under general anaesthesia (P-Value c 0.00 1 ). When patients have progressively more

uncontroi led seizure disorden, the nsk of requiring general anaesthesia increases. (OR:

mild = 1.73; moderate = 2.43; uncontrolled = 3.65).

Table 11:

I Relationship of Seizure Disorden with Dental Treatment Under General Anaesthesia 1

- - - - 1 Seizure Disorders 1 Dental Treatrnent Under General ~na&thesia 1 Row Tota l~ (

No Yes

Mildly Controlled Moderate Control

Uncontrolled Column Totals

No 553 (56.3%) 27 (48.2%) 1 17 (42.7%) 17 (34.7%) 6 (26.1 %) 720 (52.0%)

Yes 429 (43.7%) 29 (51.8%) 157 (57.3%) 32 (65.3%) 17 (73.9%) 664 (48.0%)

1

982 (71 .O%) 56 (4.0%)

274 (1 9.8%) 49 (3.5%) 23 (1.7%)

1384 (iOO%)

k ) RELATIONSHIP OF BEHAVIOUR PROBLEMS WITH DENTAL

TREATMEST UNDER GENERAL GNAESTHESL4

The relationship between behaviour problems and dental treatment under general

anaesthesia is supporied statisticall y (P-Value < 0.00 1 ). The more severe the behaviour

problems. the higher is the likelihood of requiring general anaesthesia to complete the

necessary dental treatment. (OR: mild = 2.59; moderate = 7.82; severe = 12-58).

Table 12:

Relationship of Behaviour Disorders with Dental Treatment Under General Anaesthesia

Behaviour I Dental Treatrnent Under General Anaesthesia Row Totals Disorders 1 1

L

No Mild

Moderate Severe

1

Column Totals Chi-square = 270.839 D F = 3

No 520 (71 .O%) 108 (48.6%) 69 (23.9%) 23 (16.3%) 720 (52.0%)

Yes 212 (29.0%) 114 (51.4%) 220 (76.1 %) 1 18 (83.7%) 664 (48.0%)

732 (52.g0h) 222 (16.0%) 289 (20.9%) 141 (10.2%) 1384 (100%)

1) RELATIONSHIP OF PARAPLEGIA WITH DENTAL TREATMEXT UNDER

GENERAL ANAESTHESIA

The relationship between parapleyia and dental treatment under yeneral

anaesthesia is not supponed statisticaliy (P-Value = NS).

Table 13: --

Relationship of Paraplegia and Dental 6eatment Under General Anaesthesia

1 Paraplegia 1 Dental Treatrnent Under General Anaesthesia 1 Row Totals 1 I I I

I NO I Yes I I

m) RELATIONSHIP OF OUADRIPLEGLA WITH DENTAL TREATMENT

I

No Yes

Column Totals

UNDER GENERAL ANAESTHIZSIA

The relationship between quadriplegia and dental treatment under general

Chi-square = 0.028

641 (51.9%) 79 (52.7%)

720 (52.0%)

anaesthesia is not supponed statistically (P-Value = NS).

Table 14:

593 (48.1 %) 71 (47.3%) 664 (48.0%)

Relationship of Quadriplegia with Dental Treatment Under General Anaesthesia

1

1234 (89.2%) 150 (10.8%) 1384 (1 00%)

1 Quadriplegia ( Dental Treatrnent Under General Anaesthesia 1 Row Totals 1 1

I I NO I Yes I I D

1 Yes 1 29 (41.4%) 1 41 (58.6%) 1 70(5.1%) 1 - -

Column Totals 1 720 (52.0%) 664 (48.0%) 1 1384 (1 00%) Chi-square = 3.316

n) RELATIONSHIP OF THE USE OF MEDICATIONS WITH DENTAL

TREATkIEPiT CTNDER GENERAL AYAESTHESIA

( i ) Psychotropic kledications

The relationship between the use o f psychotropic medications and dental

treatment under general anaesthesia is supponed statistically (P-Value = O 006)

indicating that the use of psychotropic medications is a risk factor for a patient to

potentially require general anaesthesia to complete the necessary dental treatment. (OR =

1.38).

Table 15:

Relationship of the Use of Psychotropic medications wiai Dental Treatment Under General Anaesthesia

1 Use of Psychotropic Medications

No Yes

Column Totals Chi-square = 7.606 i t I

Row Totals

950 (68.6%) 434 (31 -4%) 1384 (1 00%)

Dental Treatment Under General Anaesthesia

No 51 8 (54.5%) 202 (46.5%) 720 (52.0%)

Yes 432 (45.5%) 232 (53.5%) 664 (48.0%)

(ii) Seizure Medications

There is an apparent relationship between the use of seizure medications and

dental treatment under general anaesthesia (P-Value < 0.00 1 ) indicating that the use of

seizure medications is a risk factor for a patient to potentially require eeneral anaesthesia

ro complete the necessary dental treatment. (OR = 1.71 ).

Table 16:

l Relationship of Use of Seizure medications with Dental Treatment Under General Anaesthesia 1

I Use of Seizure Medicat ions

1 Dental Treatrnent Under General Anaesthesia 1 Row Totals ( I m

NO I Yes t Yes

Column Totals Chisquare = 20.027

164 (42.4%) 720 (52.0%)

223 (57.6%) 664 (48.0%)

387 (28.0%) 1384 (1 00%)

O) RELATIONSHTP OF LMTTED TREATMENT IN THE DENTAL CLINIC

WITH DENTAL TREATMEIVT UNDER GENERAL AiVAESTHESL4

The relationship between the experience of limited treatmeni in the dental c h i c

(esamination and preventive procedures only) and dental treatment under jeneral

anaesthesia is supported statistically (P-Value < 0.001) indicating that this is a risk factor

for a patient to potentially require general anaesthesia to complete the necessary dental

treatment. (OR = 3.06).

Table 17:

b

Relationship of Limited Treatrnent in the Dental Clinic and Dental Treatment Under General Anaesthesia

Lirnited Treatment in the

Dental Clinic

1

No Yes

Column Totals

Dental Treatrnent Under General Anaesthesia Row Totals

No 512 (63.4%) 208 (36.1 %) 720 (52.0%)

Yes 296 (36.6%) 268 (63.9%) 664 (48.0%)

808 (58.4%) 576 (41 -6%) 1384 (1 00%)

C) MULTIVARIANT LOGISTIC REGRESSION ANALYSIS OF

CRITERIA VARIABLES

The variables from the main data-base that were found to be statistically

significant. with respect to characterizing which patients had required care in a hospital-

based dental clinic were then analyzed using rnultivariant logistic regression analysis.

Table 18 displays a summary of these results in decreasing order of significance. The

odds ratios developed from a logistic regression analysis of multiple variables differs

from the odds ratios calcuiated for each variable individually, so the logistic regression

odds ratios will be expressed as LR-Odds Ratio.

Table 18: Summary of Logistic Regression Analysis of Criteria Variables

95% Confidence Interval Characteristic LR-Odds Ratio

1. Behaviour Problems: mild rnoderate severe

2. Mental Retardation: mild moderate severe

3. Seizure Disorder: mild moderate uncontrolled

5. Autism

6. Limited Treatment in Dental C h i c

7. Seinire Medication

8. Ps ychotropic Medi cation

Lower

d) ANALYSIS OF THE RELATIONSHIP BETWEEN

CH.4FtACTERISTICS- OUESTIONNAIRE

In the first segment of the results section, the character profile of the respondents

of the questionnaire is depicted in parallel with the character profile of the main data-

base. Overall, the questionnaire appears to be a representative sample of the patients

aîiending the Mount Sinai Hospital Dental Program for Persons with Disabilities. -4ny

apparent discrepancies between the profiles of these two data-bases may be explained by

the relatively srna11 size of the questionnaire sample population. As a result, the

following tables are presented to demonstrate the relationship between the responses to

specific questions in the questionnaire and dental care under general anaesthesia.

a) AFFIRMATIVE RESPONSES TO THE QUESTIONNAIRE

Table 19 presents the absolute number and percentage of affirmative responses

from the questionnaire (see the following page for the table).

From the table it is important to notice that 76.9% of those responding to the

questionnaire indicated having dificulty finding a cornmunity dentist to provide dental

care. For 58.7% of the respondents this dificulty was associated with dentists not

accepting persons with disabilities, and 49.0% associating the difficulty with the

behaviour of the patient. Interestingly, only 28.9% of the patients choose the hospital

dental program based on the patient's poor behaviour, while 64.4% were referred by a

physician or dentist. Although not further investigated in this study, it is likely that these

referrals were predominantly associated with the patient's behaviour.

It is important to notice that 81.7% feel they receive better care in a hospital

setting, and if given a choice 85.6% would choose the hospital over a private cornmunity

dental office. These opinions expressed by this population will likely be important

should pnmary dental care be transferred out of the hospital environment.

66

Table 19: Presentation of Remonse (Yes) From the Mailed Questionnaire

Q3. Rcgulrir prititlxit ;it an' oriicr dental 01'lIc~. (M. Rcgular patient rit tliis hoqirri l dcntal c h i c Q 5 . Rcccivsd drlntlil urrimic~i~ al anothcr dental cIinic Q6. Had difficulh finding a communie dentist to

provide dental coren 47 . IL \vas difficult to t-md a drntist to providr carr:

a) distance h m the denid ottice b) accessibîlity to a dental office C) dentist does not accept penons with disabilities* d) behaviour of the patient e) meciical problm

Q8. Drntist drclined to provide dentai care Q9. If trated in a dental clinic, trratment was accomplished:

a) in the dental chair b) ~ 5 t h resuainu c ) with sedation d) under general anaestiiesia

Q 1 O. Had multiple introductory dental visits without ioiiow-up treatmat

Q 1 1. Had been r e f d to dental specialists Q 12. Previouslg treated in a hospital-based dental clinic 413. Feel better level of dental care is provided

a) in a hospital settingn b) in a private officen C) no differencen

Q14. Given a choice would utilire a) a private community dental office* b) a hospital clinic*

Q 15. Traveling time to reach this hospitai a) 30 minutes b) 30 minutes to 1 hour C ) 1 to 1 lR hours d) 1 1/2 to 2 hours e) p a t e r than 2 hours

Q 1 6. Area patient normally livcs in a) City of Toronto b) Mem Toronto c) Gram Torouto Area d) EIsavhere in Southem Ontario e) Etsewhere in Ontario

417. Chose to corne to the hospitai dental clinic a) poor behaviourn b) complicated medicai history C) r e f d h m a doctor/dentist d) r e f d h m a friend e) bena access

Q18. Patient cooperates at ocher medical visitsn Q 19. Patient bnishes own teeth 420. Difficult to assist patient with oral hygiene* 42 1 . Believe patient has a dentai problem at this the 422. Cost of dencd care prevents regular dentai care

' These questions are fùrther anaiyzed with Chi-squared analysis

b) COMPARISON OF OUESTIONNAIRE RESPONSES TO DENTAL

TREATMENT UNDER GENER4L AKAESTHESIA

(i) Relationship o f a History of Difficulty Finding a Community Dentist to Provide

Dental Care with Dental Treatment Under General Anaesthesia

The relationship between respondents having difficulty finding a community

dentist to provide dental care and a hisiory of dental treatrnent under general anaesthesia

is not supponed statistically (P-Value = NS).

Table 20:

Relationship of Questionnaire Respondents Who Indicated Difficulty Finding a Cornmunity Dentist to Provide Dental Care with the

Respondents History of Dental Care Under General Anaesthesia Difficulty Finding A

Dentist in the Corn rn unity

No Yes

Column Total -

Chi-square = 2.080

Row Total

24 (23.1 %) 80 (76.9%) 1 04 (1 00)

Dental Care Under General Anaesthesia

No 12 (50.0%) 27 (33.8%) 43 (41.5%)

Yes 12 (50.0%) 53 (66.2%) 65 (62.5%)

(ii) Relationship of a History of Difficulty Finding a Dentist to Provide Dental Care

Due to Non-Acceptance of Persons with Disabilities with Dental Treatment

Linder General Anaesthesia

The relationship between respondents having difficulty findinç a dentist to

provide dental care due to non-acceptance of persons with disabilities and a history of

dental treatment under generai anaesthesia is not supported statistically (P-Value = NS).

Table 21:

Relationship of Questionnaire Respondents Having Difficulty Finding A Dentist to Care for them Due to NonAcceptance of Persons with Disabilities with Their Experience with Dental Care Under General

Anaesthesia

Dentist Does Not Accept Persons Dental Care Under General Anaesthesia Row Total with Disabilities

No 1 Yes No 20 (46.5%) 23 (53.5%) 43 (41.3%)

Yes 19 (31.1%) 42 (68.9%) 61 (58.7%) Column Total 39 (37.5%) 65 (62.5%) 104 (1001

(iii) Relationship of Respondents Feeling they Receive a Better Level of Dental

Care in r Hospital Setting with Dental Treatment Under General

Anaesthesia

The relationship between respondents feeling they receive a better level of dental

care in a hospital setting and a history of dental treatment under general anaesthesia is not

supponed statistically (P-Value = NS).

Table 22:

Relationship of Questionnaire Respondents Feeling They Receive A Better Level of Dental Care in a Hospital Setting with

Their History of Dental Care Under General Anaesthesia Better Care in

a Hospital

No Yes

Column Total r

Row Total

19 (1 8.3%) 04 (81 -7%) 1 04 (1 00%)

Dental Care Under General Anaesthesia

Chi-square = 0.004 ! l 1

No 7 (36.8%) 32 (38.1 %) 39 (37.5%)

D F = l I

Yes 12 (63.2%) 53 (63.9%) 65 (62.5%)

1 1 -

P-Value = NS I I j

(iv) Relationship of Respondents Feeling they Receive a Better Level of Dental Care

in a Private Dental Office with Dental Treatment Under General

Anaest hesia

The relationship between respondents fellinj they receive a bener level of dental

care in a private dental off~ce and a history of dental treatment under general anaesthesia

is not supponed statistically (P-Value = NS).

Table 23:

Relationship of Questionnaire Respondents Feeling They Receive A Better Level of Dental Care in a Private Dental Office with Their

Experience of Dental Care Under General Anaesthesia

No Yes No 37 (37.8%) 61 (62.2%) 98 (94.2%)

Yes 2 (33.3%) 4 (66.7%) 6 (5.8%) Column Total 39 (37.5%) 65 (62.5%) 1 04 (1 00%)

Chi-s~uare = 0.047 ' l

I Better Care in a Private Office

Dental Care Under General Anaesthesia Row Total

(v) Relationship of Respondents Feeling they Receive an Equal Level of Dental

Care in Either a Hospital Setting or a Private Dental Office with Dental

Treatment Linder General Anaesthesia

The relationship between respondents fellinç they receive an equal level of dental

care in a hospital setting or a private dental offke and a history of dental treatment under

generai anaesthesia is not supponed statistically (P-Value = NS).

Table 24:

Relationship of Questionnaire Respondents Feeling They Receive An Equal Level of Dental Care in Either Hospital Setting or a Private Dental Office with Their Experience of Dental Care Under General Anaesthesia

Equal Dental 1 1 Care in Either a

Hospital or 1 Dental Care Under General Anaesthesia Row Total I Private Setting

No Yes

Column Total Chi-square = 0.018 ' DF= 1

86 (82.7%) 18 (17.3%) 1 04 (1 00%)

No 32 (37.2%) 7 (38.9%) 39 (37.5%)

Yes 54 (62.8%) 17 (61.1%) 65 (62.5%)

(vi) Relationship of Respondents Feeling they Prefer Receiving Dental Care in A

Hospital Setting with Dental Treatment Under General Anaesthesia

The relationship between respondents feeling they prefer receiving dental care in

a hospital setting and a history of dental treatment under general anaesthesia is not

supponed statistically (P-Value = NS).

Table 25:

Relationship of Questionnaire Respondents Preference for Receiving Dental Care in a Hospital Setting with Their Expenence

of Dental Care Under General Anaesthesia Prefer Care in 1 Dental Care Under General Anaesthesia 1 Row Total 1

chi-square = O. 130 I i D F = l ! 1 I

No Yes

Column Total

No 5 (33.3%) 34 (38.2%) 39 (37.5%)

Yes 1 O (66.7%) 55 (61.8%) 65 f62.S0h1

15 (14.4%) 89 (85.6%) 104 l iOO%\

(vii) Relationship of Respondents Feeling they Prefer Receiving Dental Care in A

Private Office with Dental Treatment Under GeneraI Anaesthesia

The relationship between respondents feeling they prefer to receive dental care in

a pricate office and a history of dental treatrnent under genera! anaesthesia is not

supponed statistically (P-Value = NS).

Table 26:

- - - - -

Relationship of Questionnaire Respondents Preference for Receiving Dental Care in a Private Dental Office with Their Experience with Dental Care Under General Anaesthesia

Prefer Care in a Private Dental

Office

No

Dental Care Under General Anaesthesia

Yes Column Total

Row Total

No 31 (36.9%)

:hi-sauare = 0.066

8 (40.0%) 39 (37.5%)

Yes 53 (63.1 %) 84 (80.8%) 12 (60.0%) 65 (62.5%)

20 (19.2%) 1 04 (1 00%)

(viii) Relationship of Respondents Who Choose the Hospital Dental Clinic due to

Poor Behaviour with Dental Treatment Under General Anaesthesia

The relationship between respondents who chose the hospital dental c h i c due to

poor behaviour and history of dental treatment under çeneral anaesthesia is supponed

statistically (P-Value = 0.00 1 ) indicating that a detemination of a patient's behaviour is

important as it appears to be a risk factor for requiring general anaesthesia to complete

the necessary dental treatment.

Table 27:

Relationship of Questionnaire Respondents Who Chose the Hospital Dental Clinic due to the Patients Poor Behaviour with Their Experience with Dental Care Under General Anaesthesia

1 Patients Poor 1 Behaviour Dental Care Under General Anaesthesia Row Total I I

I B 1

I NO I Yes I I No

Yes Column Total

Chi-square = 10.506

35 (47.3%) - 4 (1 3.30/4---- 39 (37.5%) - - '

39 (52.7%) 26- (40:0%)

- 65- (86.7OhT -

74 (71.2%) 30 (28.8%)

' 1 04( 1 00%-)

(ix) Relationship of Respondents Who are Cooperative at Other Medical Visits

with Dental Treatment Under General Anaesthesia

The relationship between respondents who are cooperative at other medical visits

and a history of dental treatment under general anaesthesia is supponed statistically (P-

Value < 0.00 l ) indicating that behaviour is a risk factor for requiring dental treatment

under general anaesthesia.

Table 28:

Relationship of Questionnaire Respondents Cooperation at Other Medical Visits with Their Experience with Dental Care Under

General Anaesthesia

Cooperative at 1 I I Other Medical 1 Dental Care Under General Anaesthesia ( Row Total 1

Visits

No Yes

Column Total Chi-square = 14.040

40 (38.5%) 64 (61 -5%) 1 04 (1 00%)

No 6 (1 5.0%) 33 (51 -6%) 39 (37.5%)

Yes 34 (85.0%) 31 (48.4%) 65 (62.5%)

(x) Relationship of Respondents Who are Dilficult to Assist With Routine Oral

Hygiene with Dental Treatrnent Gnder General Anaesthesia

The relationship between respondents who are difficult to assist with routine oral

hy-iene and a histoq of dental treatmenr under general anaesthesia is not supponed

statistically (P-Value = NS).

Table 29:

Relationship of Questionnaire Respondents Who are Difficult to Assist With Routine Oral Hygiene with Their Experience with Dental Care

Under General Anaesthesia -- -

1 Difficult to Assist 1 1 1

l VVith Routine Oral Dental Care Under Genera! Anaesthesia Row Total iiygiene I I I

I I No 1 Yes I I No

Yes Column Total

I

Chi-sauare = 4.530

24 (48.0%) 15 (27.8%) 39 (37.5%)

26 (52.0%) 39 (72.2%) 65 (62.5%)

50 (48.1 %) 54 (51.9%) 1 04 (1 00%)

IV. DISCUSSION -

a) OC'ERVIEW

The Mount Sinai Hospital Dental Program for Persons with Disabilities provides

a unique population of individuals with a vast array of disabling conditions. As a

consequence, this study offers a comprehensive summary of information that represents a

broad spectrum of characteristics relevant to the ongoing dental care of this speciai

population.

(i) Criteria for Hospital-Based Dental Care

This study has been able to determine that the main characteristics which help

identify which patients should be treated in a hospital-based dental program under

general anaesthesia are moderate to severe behaviour problems and moderate to

sevedprofound mental retardation.

In addition, the patients who were treated under general anaesthesia can be

characterized as having the following CO-factors, as determined by the multivariant

logistic regression analyses, in order:

i Seizure disorder - particularly uncontrolled

ii) Scoliosis

iii) Autism

iv) Limited procedures in the dental clinic - examination and preventive

procedures only

v) Seizure medications

vi) Psychotro pic medications

(i i) Proportions of Patients Requiring Hospital-Based Dental Care

Based on the crireria that a patient with a history of dental care under general

anaesthesia requires dental care in a hospital-based dental prosram, it appears that 48.0%

of the patients presently reristered with the Mount Sinai Hospital Dental Program for

Persons with Disabilities, actually require care in that facility. Thus, over one-half of the

patients presently attending this program should or could attend a community-based

dental c h i c which may provide some specialized services.

(iii) Factors Correlating To the Need for Hospital-Based Dental Care

It has not been possible to determine whether factors deemed to define patients

who require hospital-based dental care are similar or identical to those which correlate

with patients who routinely require the delivery of their dental care under general

anaesthesia, since a history of dental care under general anaesthesia at moun nt Sinai

Hospital was utilized as the determinant outcome delineating those who do and do not

require dental care in a hospital setting. However, when characteristics from the medical

profile were correlated with one another (see Appendix V-G), the statistically supported

relationship between the variables corresponded with each of the criteria variables

statistically supported relationship with a history of dental care under general anaesthesia.

This supports the notion that those patients requinng dental care in a hospital-based

dental program can be identified partially by a need to receive dentai care under general

anaesthesia. These characteristics can not be assumed to be the only criteria for requinng

dental care in a hospital environment because it does not take into consideration those

individuais who are able to receive dental care in a dental chic , but due to compounding

medical conditions, require a hospital environment to ensure the safe delivery of the

necessary dental care.

(iv) Difficulty Obtaining Dental Care in the Community

.Mthough 76.9O0 of patients responding to the questionnaire indicate having

difficulty finding a community dentist to provide dental care, and 85.6% would choose to

be treated in a hospital-based dental prograrn, there is no statistically supponed

relationship between these responses and those patients' requirement for dental care in a

hospital setting. However, when questions related to the patient's behaviour were

assessed relative to a history of dental care under general anaesthesia, there was statistical

evidence indicating that those patients identified by the caregiven as exhibiting 'poor

behaviour' are likeiy to require dental care in a hospital dental program as alluded to

above (section iv.i).

(v) The Use of A Questionnaire to Develop a Patient Profile

The main data-base and the questionnaire have demonstrated a similar ability to

identify patients who require dental care in a hospital-based dental prograrn. In

pmicular, both of the data sets have found that identification of patients with behaviour

problems, either by the caregiver or the dentisf is the most important characteristic for

determining which patients are most likely to require dental care under general

anaesthesia. The data also indicated that the use of a self-administered questionnaire.

which investigates both a patient's ability to cooperate as well as delineating general

medical information, can create a patient profile similar to that obtained from a detailed

retrospective chart review.

b) MAIN DATA-BASE

i ) Representativeness of the Subiects

The entire population of 1384 individuals registered as patients with the Mount

Sinai Hospital Program for Persons with Disabiiities was utilized to create a computer

generated data-base of 93 separate characteristics pertaining to background information,

farnily history, medical information, medication information, surgical experiences and

dental information. This population provided representative samples of individuals with

a multitude of singular and combined disabling conditions. Given that the entire

population of registered patients with the Mount Sinai Hospital dental program were

incorporated into this study, it can be concluded that the information denved and the

conclusions reached are representative of this population of persons with disabilities.

(a) Background Information

The demographics of this population demonstrate a group with equal

representation of the sexes and with a mean age of 38.6 yean old. Although the

populations of persons with disabilities have tended to have a shorter life span. ofien as a

consequence of complicated medical conditions, it is apparent that the present group is

starting to enjoy a relatively 'normal' life span.24 This is likely the result of improved

health care, in which dental health is a rewgnized component. 6.1 1.14

When the rnean age of the patients seen in 1995 and 1996 was determined (34.0

years), it seems that the age of patients being seen is decreasing. This could represent an

improving anitude towards dental care for persons with disabilities. Although not

investigated in this study, it appears that the degree of medically cumplicating conditions

found in this hospital dental population is increasing as we11.~~ It may be that more

community-based dentists are caring for the less severely disabled persons leaving those

with more wmplex problems (medical and dental) to be cared for in the hospital. The

nature of these more complex disabilities and their effect on an individual's activities of

daily living, particularly oral health and care, would be a good future study based on this

population's demographics.

-4 large ponion of the population appears to reside in the family or foster home.

and with the increasinç trend towards deinstinitionalization this number will likely

continue to increase in the future. IC.10.17 Since families tend to have a deeper

cornmitment to the welfare of their members, this process of moving persons with

disabilities into the community may represent an ideal forum whereby the relative value

of dental health in relation to a penon's overall health and well being can be reinforced.

It is possible that the persons with disabilities who reside in the family home represent a

population of lower functioning penons or those with more complicated medical states

as many higher functioning individuals are being encouraged to live on their o ~ n . ' ' ~ ~

Thus a greater proportion of the responsibility of assisting with the patient's activities of

daily living is shifted ont0 the caregivers. Assuming the population of persons with

disabilities who reside in the farnily home are more incapacitated then their attendance at

a hospital-based dental ch ic , which offen the use of general anaesthesia when indicated.

would be undeetandable as there is a larger range of dental and adjunctive medical

facilities available on site.

The presence of a large proportion of the hospital population who reside in group

homes is also important. Generally this includes those individuals who are functioning at

a lower cognitive level and/or present with behavioural problems, as well as those with

more complicated medical states. As indicated for the group who live in the farnily

home, a hospital-based dental clhic which provides access to multiple adjunctive

services is a beneficial location to provide complete dental care rather than moving from

one location to another if one treatment modality is ineffective.

The majority of the patients appear to have been referred to the hospital by a

dentist. Alrhough this was how it appean in the hospital dental charts, it may not tmly

represent the person who referred the patient. Indeed, the patient or designated caregiver

must fil1 in this segment of the medical history form prior to being initially seen by the

staff dentist, thus they often fiIl in the name of a dentist even if no services had been

provided by that dentist simply because the space was provided on the hospital form.

(b) FamiIy History

As a whole the information gathered from the family history segment of the

dental chans was lirnited and sketchy if present at all. This is due to the relatively large

proportion of the patients living in group homes or institutions. Patients from proup

homes/insritutions are more likely to have moved between several locations, or they may

present with a caregiver with who is unaware of the patient's past history beyond the

relevant medical conditions.

Overall it appears that a farnily history of heart disease is the most prevalent

condition. Since this includes developmental and acquired diseases, it is difficult to

determine how this population compares with society as a whole. A farnily history of

hypertension is the second most prevalent condition reported. It has been documented

that greater than 20% of society has some degree of hypertension. The pattern of disease

observed in this population is consistent with patterns seen in society as a whole, so it is

not representative of any unusual state within the special care population.83

Finally, a family history of diabetes is reported fairly frequently in this population

(14.4%) which is higher than that found in society as a whole (3%)? This rnay have

implications within the population studied, but is beyond the s a p e of this paper.

(c) Medical Profile

The medical profile developed from this study presents a picture of a population

that on average suffers from more than one complicating medical condition. The

prevalence of some form of mental retardation is present in 73.0% of this group with

67.1% having some degree of behavioural problem. It becornes apparent that this

population represents a group of penons with more severely disabling conditions without

the ability to comprehend the impact of those disabilities fully.

The following segment of this paper will expand upon those medical conditions

found to be important as critena for patients being treated in a hospital-based dental

program. It will also be used to expand on those characteristics previously hypothesized

to be predictive of the need for general anaesthesia. but subsequently were found to not

be.

Mental retardation has been found to be related strongly to al1 the characreristics

tested. One explanation of this is that al1 the characteristics analyzed, with the exception

of pneumonia, have a neurologic component in their etiology. This suggests that the

expression on one deficit in the neurologic reaim is likely to be accornpanied by the

expression of other deficits. More specifically, it has been found that the more severe the

mental retardation, the greater the risk of some form of motor dysfunction, including

those muscles involved with degluttition.'

The distribution of this population by level of mental retardation demonstrates an

interesting trend. Although 80% of al1 individuals with mental retardation are diagnosed

as being mildly retarded7, the population under study here has 33.5% with mild, 26.5%

with moderate and 17.6% with severdprofound mental retardation. This distribution

indicates that the hospital-based dental program plays a vital role in providing services

for that srnaIl portion of this society with the lowest cognitive abilities, and the frequently

associated behaviour problems. Indeed, 80.9% of the patients found to have severe

behaviour problems, and 72.7% of patients with moderate behaviour problems have been

identified as having moderate and severe/profound mental retardation. This is important

with respect to those patient's requirement for dental care in a hospital-based dental

program, since 76.9% of those with severe mental retardation and 66.4% of those with

rnoderate mental retardation have had a dental general anaesthetic at Mount Sinai

Hospital (these represent 18.7% and 37.2% of al1 dental general anaesthetics

respective1 y).

Some of the variances observed in each mental retardation level may be

associated with the method of data collection. If the actual level of retardation was

indicated in the dental chart this was registered directly. If no level was indicted, then

any information indicating functional level was used to determine which group the

patient belonged with. If a range was given (i.e. moderate to severe). then the higher

functional level was utilized. If not otherwise indicated then no entry was made.

Traditionally. the most common reason cited for behavioural problems in persons 7.213.85.86 with mental retardation was the Strauss syndrome. This was believed to be a

result of brain injury. In addition to the more typical hyperactivity, inaction and

impulsivity . the more orsanically central nemous system impaired persons with mental

retardation can exhibit greater degrees of aggression. repetitive, self-stimulatory, self-

injurious and other bizarre and stereotypic behaviours.' AIthough the incidence of these

neurobehavioural symptoms does seem to correlate inversely with intelligence quotient.

the syndrome complex cm occur in penons with only a mild degree of mental

retardati~n.~ The concept of cerebral dysfunction and behavioural disorders being related

is not disputed, but the diagnosis of Strauss syndrome is now infrequently used in the

identification of persons with both these dis or der^.^^ To try to minimize the expression of these types of behaviours it has been

recommended to manage these patients with behaviour modification techniques and

environmental saucturing.' Thus in the context of dental care, behaviour is an important

determinant of whether treatrnent will be required in a hospital setting under general

anaesthesia. This may be related to the fact that general dental practitioners use

behaviour as the predominant variable in detennining whether the patient will be ueated

in their ofice. 78.80

It has been found that 85% of penons with autism have some level of mental

subnormality, with the majority being in the moderate range. As with any patient with

this level of cognitive functionicg there is often an associated abnormality in motor and

behavioural expression. In patients with autism the behavioural problems are frequently

fùrther complicated by ngidity and inflexibility in leaming new skills as well as a fear of

change, with a preference for rnaintaining routines." Given these characteristics it is not

surprishg that in this population those individuals with autism display severe behaviour

problems (17.4%) or moderate behaviour problems (31.9%), with 65.2% of al1 the

autistic patients having a history of dental care under general anaesthesia.

Scoliosis has been found to be associated with congenital, neuromuscular and

variable genetic disorders in 20% of its occurrences. These groups are important since

they tend to identifv individuals with multiple complicating conditions. such as those

individuals included in this study (for esample, neuromuscular scoliosis is the deformity

associated with cerebral palsy and muscular dystrophy ). Since these patients have

underlying neuromuscular diseases which often prevent walkinp, the scoliosis has been

found to worsen more frequently and quickly than observed with idiopathic scol i~sis .~"

This progressive scoliosis is frequently cornplicated with a decrease in pulmonary

function which places these patients at a greater risk of aspiration and its associated nsk

of pneumonia. Superimposed on these underlying medical conditions is the risk for these

patients of also having mental retardation and the known risk factors related with t h i ~ ? ~

It is interesting that in the present study scoliosis was present in 5 1.2% of patients with

seinire disorders, 61 -2% of patients with behaviour problems and 70.1% had a history of

dental treatment under general anaesthesia. This again supports the concept that the

degree of mental retardation and behaviour problems are the most pervasive

characteristics on the developed criteria list.

Seizure disorders have been identified as the symptomatic expression of

underlying brain pathosis or disordered brain function with an incidence ranging from

0.8% to 1.1%. Variation in clinical manifestation are accounted for by variation in the

portion of the brain involved and the nature of the insult itself. When seizure disorders

continue into adulthood there has frequently been a degree of concurrent mental delay

often rnanifesting in some level of mental retardati~n.'~ In the population of this study,

85.8% of those patients with mild, moderate or uncontrolled seimre disorden display

some level of mental retardation. This is not surprising since seizure disorden are

characterized as a randomly recurring symptorn complex resulting from an episodic

disturbance of central nervous system function, associated with an excessive, self-

limited, neuronal discharge which indicts the presence of an underlying neurologic

deficit. Again, whenever deficiencies in mental capability are identified, behaviour

problems are likely to be found in conjunction. In this population 55.8% of the patients

with seimre disorden have some degree of behaviour problem and 68.1% of those

patients with moderate or uncontrolled seizure disorders, but only 23.6% of those with

mild seizure disorders. have received dental care under general anaesthesia. This

indicates a decrease in the ability to appropriately provide dental care in an ambulatory

c h i c environment with decreasinç control of the seizure disorder. The underl ying

relationship between seizure disorders and behaviour may be related to an underlying

neuroloçic impairnent which manifests through the patient being unable to respond

appropriately7 in the clinical dental sening.

(d) Pharmacotherapy

The use of medications is prevalent within this present study population (681%),

with 3 1.4% taking psychotropic medications and 30.0% taking seizure medications. In

particular, the subset of persons taking psychotropic or seizure medications presents with

a higher nsk of having dental care under general anaesthesia (53.5% and 57.6%

respectively).

It is interesting to note that the percentage of persons taking psychotropic

medications who have had a general anaesthetic to complete dental care is lower than the

nurnber of persons with behaviour problems who require dental care under general

anaesthesia (69.3%). The use of psychotropic medications may help to control some

behaviour related problems that present in the dental chic, thus perrnitting the

completion of treatrnent without the use of general anaesthesia. This may be associated

with the medications ability to alter cognitive and behavioural func t i~n in~ .~*

Those patients taking seizure medications and those having a history of seizure

disorder present with a fairly equal proportion requiring dental treatrnent under general

anaesthesia (57.6% and 59.5% respectively). This is likely associated to some degree

with the effea of seizure medications on cognitive function and behaviour. Some

medications, such as phenobarbital, can produce hyperkinesis in some individuals. To

overcome this the drug dosages may be increased to produce lethargy and sedation, but

this increase has the potential to affect learning and social interactions. Although only

suggestive evidence exists, it appears that many ami-seizure drugs have adverse effem

on behaviour and cognition.*'

When developing criteria to select which patients should be treated in the hospital

it is reasonable to use a present his~ory of takins psychotropic medications andor seizure

medications as pan of the profile. However, since the individual and logistic regression

odds ratios appear to be fairly close to one, the strengh of the relationship benveen the

use of either of these medications and the risk for dental care under general anaesthesia is

present but weak. Therefore, a history of use of these medications alone, without a

compounding medical profile, should not be the limiting criteria for defining an

individual as a candidate for ongoing dental care in a hospital-based dental practice.

(e) Surgical Experiences

In total 48.0% of the population experienced dentai care under general anaesthetic

at Mount Sinai Hospital at some point. Of these 29.8% experienced only one dental

general anaesthetic. This indicates that the procurement of dental treatment under

general anaesthesia may be an important procedure to establish a good badine of oral

health, and that ongoing maintenance may be performed successfully with the adjundive

use of behaviour modification te~hni~ues.~''"'~ 637*766n This Iends support to the

doctrine that dentists in the community could be utilized to monitor and maintain the

ongoing oral health of a proportion of this population.

(f) Dental Experiences

Approximately one third of the patients are being maintained by each of the

treatment provider groups: staff, intems and undergraduate studem. Although the

intems and in particuiar the undergraduate students are being supervised by the staff, the

majonty of the care is being provided by the designated dental group, be it recall

maintenance or more extensive dental treatments. This division of the population

between these three dental treatment groups again provides support to the proposa1 that

the majority of the patients registered with the program could be treated on an ongoing

maintenance basis by dentists in the community. However, since this hospital dental

c h i c treats such a srnall proportion of al1 persons with disabilities that potentially reside

in the community, the presence of persons with a wide range of medical, psycho-social

and dental conditions serves ro expose the training dentists to a niultitude of situations

which they would otherwise be unlikely to esperience while in dental schools In

addition. it has been shown that there is a positive association between beina exposed to

persons with disabilities, while in training. and being willing to accepr persons with

disabilities into their practices following graduation. 11(.19.26.2733,34.38.4 1.42.50 This rnay be

explained by the concept that expenence tends to eliminate a proportion of the

uncertainty regarding more complicated medical histones, unexpected patient behaviours

and the management required.

The observation that the undergraduate students can and do provide onpoing care

for the patients in this program should not be assumed to indicate that this program is

unnecessary. Since approximately 50% of this population is being treated in the hospital

ambulatory dental clinic, it may be assumed that the majority of these patients could be

treated in a community-based dental clinic. Until a community-based dental program

has been established which would provide the necessary dental care for the patients, as

well as to allow the dental students continuing expenence treating persons with

disabilities, the present hospital-based dental program should continue its appropnate

utilization of the available resources.

When the types of dental treatment were divided into limited treatment versus any

treatment in the dental clinic, there is a distinct relationship between being in the limited

treatment group (41.6%) and having a history of requiring dental care under general

anaesthesia. In fact 55.4% of the group with limited clinic treatment have a history of

dental care under general anaesthesia. indicating that this is a risk factor for future dental

general anaesthetics. Thus limited treatment in the dental c h i c should be added to the

profile of characteristics used to mess the need for dental care in a hospital setting, but

this does not preclude the position that the ongoing dental maintenance care could be

performed by dentists in the community.

The majority of persons registered with the hospital-based dental program for

persons with disabilities do not have a specified time for recall appointments (46.0%),

although the proportion of patients being maintained on a three month recall program is

high (40.7%). The literature supports the trend for recalls needing to be within one year

to rninirnize the occurrence of new and recurrent caries." For the proportion of patients

not being classified into one of the three designated recall time periods (three. six and

twelve months) it is important to adapt the charts to detemine whether these patients are

being serviced by another dentist in the community or whether no maintenance therapy is

being provided. If the patients are being lost af'ter treatment is completed, whether in the

dental clinic or under general anaesthesia, then a more active follow-up program may be

required.

C) OUESTIONNAIRE DATA-BASE

i ) Representativeness of the Su biects

When the results of the character profile for those persons responding to the

questionnaire was displayed beside the character profile developed for the main data-

base, the majority of the characteristics appear to be similarly represented in both

populations. The remainder of this section will expand upon the characteristics which

differ b e ~ e e n the data-bases and may impact on the representativeness of the

questionnaire.

The only characteristic which was found to be significantly different from the

main data-base was the place of residence, with the family/foster home being over

represented in the questionnaire. One expianation for this could be that the family has a

greater vested interest in the well-being of its component members, especially as

compared with group homes and institutions. It is possible that as the process of

deinstitutionalization progresses, the proportion of persons residing in the family home

increases, and this study may be reflecting this change in demographics since the main

data-base is an accumulation of patients from 1987 onward. Thus it is probable that the

people who responded to the questionnaire have been more recently registered with the

hospital dental program.

The lower proportion of penons who live on their own responding to the

questionnaire may be accounted for by the fact that persons with lower education are less

likely to retum rnailed s ~ r v e ~ s . ~ ~ This will be fûrther explained later in this paper.

ii) The Ouestionnaire

It is interesting to note that 76.9% of the questionnaire respondents indicated

dificulty finding a dentist in the community to provide dental care and 58.7% indicated

this was due to the dentist not accepting persons with disabiiities. It is worthy to note

that 49.0% of the respondents believe that the patient has poor behaviour, but only 28.3%

of these choose the hospital as a referral due to the patient's poor behaviour. This

discrepancy may be associated with deficiencies in the format of the questionnaire, since

it rnay not have been clear that more than one reason for referral was acceptable. For

esample. a patient may have poor behaviour. but a dentist referred that patient to the

hospital. thus only the dentist referral was noted even though the dentist refened the

patient due to poor behaviour. Neither of these factors were related to the persons having

a history of dental care under general anaesthetic.

Also worth noting is the fact that 61.5% of the patients indicated cooperation

during other medical visits, but 62.5% of the population have a history of dental care

under general anaesthesia. The apparent discrepancy in these values rnay be attributed to

some degree to differences in the sources of information used for rating behaviour.

Patients indicated as being cooperative at medical visits was being rated by their

caregiven, and it rnay be m e that they were behaving to the best of their ability. In

contrast, the proportion of this population that required a dental general anaesthetic was

being assessed by dental personnel in a dental environment, who indicated the most

likely reasons for requiring an anaesthetic were associated with behaviour problems. The

determination of a patient's behaviour appears to be very important in deterrnining how

to best meet that patient's dental requirements, so an extensive history regarding the

patient's behaviour in various settings should be obtained, keeping in mind the

differences in interpretation which rnay exist.

Only 8.7% of the patients indicated having multiple introductory visits without

proper follow-up appointments. Of these 64.4% were referred to the hospital dental

c h i c by a dentist or physician. This rnay indicate that appropriate referral processes are

occumng. This rnay also indicate that there are a significant number of dentists who will

not even attempt any form of examination or maintenance treatment for persons with

disabilities and instead choose to refer these patients. Milnes et al (1995)j0 stated that an

increasing number of younger dentists are indicating a willingness to provide care for

penons with physical and mental disabilities, but it is unclear to what extent this means

with regards to the types of patients being treated and the treatments provided.

Having a preference for either hospital dental offices (85.6%) or feeling that this

location provides a better level of dental care (8 1.7%) has no bearing on whether dental

care has been provided under general anaesthesia. In contrast, the reported histories of

refenal due to poor behaviour, limited cooperation at other medical visits and dificulties

in assisting with routine oral hvgiene are positively related to dental care under general

anaesthesia. These characteristics should be incorporated into the character profile of

patients who should be treated in the hospital-based dental clinic.

iii) The Effectiveness of this Ouestionnaire

Mail surveys have traditionally been a less effective modality for surveying

populations due to difftculties associated with low response rates and problems with

questions being misread and misinterpreted b y respondents. As a whole, researchers

have considered the mail survey inherently inferior to other methods, to be used only

when there is no other c h o i ~ e . ~ ~ ~ ~

There are three major distinct disadvantages of mail surveys. The first problem is

the difficulty of accessing a representative sample of a particular population.g0 In the

present study the questionnaire was sent out to a specific subgroup of a defined

population, thus producing a reasonable representative sample. However, it is possible

that the sample population was selected with a bias since it represented the specific

subgroup registered with the director of the program, rather than a random sample from

the entire population.g1

A second disadvantage of mail questionnaires is that arnong those who do refuse

to be sunreyed, there is likely to be a greater portion of people with lower e d u c a t i ~ n . ~ ~

This disadvantage is important for the present study as the majority of the population

surveyed are known to have some level of mental retardation. The manifestation of this

on the response rate was indicated earlier in this paper."

The final disadvantage of mailed questionnaires is the difficulty of adequately

handling certain kinds of questions - namely, open-ended items and tedious and bonng

questions.go Again, the questionnaire associated with this study exhibited some of these

problems, and this may help fùrther explain why the response rate was relatively low.

More specifically, the presence of multiple questions regarding behaviour problems and

poor behavioun not only stimulated written responses regarding the inappropriateness of

wordinj. but also presented a bias towards the subjective interpretation of what was

meant by poor behaviour."

Despite the shoncomings associated with this particular questionnaire study. it

appears to have been an effective tool to complete this preliminary study. Although the

response rate was relatively low, the results correlate well with those conclusions derived

from the main data-base, in particular with regards to the determination of behaviour

factor^.^' The population who responded to the questionnaire appean to represent the

population of persons with disabilities registered with the Mount Sinai Hospital Dental

Program for Persons with Disabilities as reflected by assessing the respondents

characteristics relative to the entire study population. It would be reasonable to state that

questionnaire studies may be used to represent the views of this type of study population

without the need for a retrospective charî analysis to confim the representativeness of

responses.

d) CONCLUSIONS

The current study involved detailed collection of data from hospital dental cham

and related the information obtained €rom these chans to responses to a questionnaire

rnailed out to a subset of the entire population of patients registered with the Mount Sinai

Hospital Dental Program for Persons with Disabilities. The data revealed that there are

some specific determinants of a person's character profile which are strongly related to

the patient requiring dental care in a hospital setting.

When the information generated from the main data-base and the questionnaire

forms have been amassed, it is possible to create a character profile of patients who

require dental care in a hospital setting. The characteristics which should be investigated

during the initial dental visit are:

i) B ehavioural Prob lems - particulad y moderate to severe

ii) Mental retardation - particularly moderate and severe/profound

Other CO-factors that categorize the patients who have had treatment under

general anaesthesia in order are:

i) Seinire disorder - particularly uncontrolled

ii) Scoliosis

iii) Autism

iv) Lirnited procedures in the dental clinic - examination and preventive

procedures only

v) Seizure medications

For the population studied most if not ail of these listed cofactors were seen in

association with mental retardation and behaviour problems.

It is important to acknowledge that this study has some limitations when trying to

determine the character profile of a person with disabilities who should be aeated in a

hospital-based dental clinic. By setting the criteria of a history of dental care under

general anaesthesia as the limiting characteristic delineating those who need and do not

need this environment. there is a distinct proportion of patients who are omined €rom the

criteria. This group includes those pesons with medically comprornising conditions. but

who are cognizant of the required treatment and able to tolerate receiving the required

treatment in a conscious state in the dental c h i c . This would include persons with

conditions such a cerebral palsy, Down's syndrome, post stroke, and unstable angina. As

a result, the developed criteria should not be taken as being exclusive, but should be used

as a guide to heip identify and direct patients to the appropriate delivery method of dental

a r e .

e) FUTURE CONSIDER4TIONS

1 ) The main data-base should be maintained to continue monitoring the demographic

characteristics of the patients qistered with the Mount Sinai Hospital Dental Program

for Persons with Disabilities.

2) The main data-base may be expanded to investigate more specifically the nature of

the actual dental treatment being performed, and to be more specific as to who is

perfonning that treatment. If the undergraduate dental students are performing the

majority of the cornprehensive dental treatment, then presumably those patients could be

seen by a general dentist in a private office.

3) A more detailed and specific questionnaire should be developed to determine the

reasons people attend a hospital based dental prograrn and what characteristics of the

hospital prograrn are perceived as being beneficial. This couid help to guide and modify

the development of the existing prograrn to provide a better and more efficient program

for the delivery of dental care.

4) The types of special care patients that general dentists are accepting in private dental

practice should be investigated in order to determine why and who they are refemng to a

hospital-based dental program. This could help to determine the best mechanisms of

referral to help develop a two tiered dental care system, in which patients who are being

seen by general dentist for recall maintenance therapy, and then being referred to the

hospital if and when comprehensive dental treatment is required under general

anaesthesia.

5 ) Develop a network ba is to enhance the understanding for both dentists and

physicians as to what type of patient should be referred to a hospital-based dental

specialty practice.

6) Develop a follow-up study to detemine whether the teaching hospital mode1 of

esposing dental students to persons with disabilities engenders these future dentists to

accept these patients into their future practices.

V - APPENDIX B

CATEGORIES OF INFORMATION FOR THE MAIS DATA-BASE

BACKGROUND INFORlMATION

1 . MSDii -9 digits

2 . Sex - M= 1, F=2

3 . DOB - mrn/dd/yy

4. Type of Residence - On own = 1 FamilyEoster Home = 2 Group Home = 3 Institution = 4 Other =5

5. Date of Initial Visit to MSH - mm/dd/yy

6. Date of Most Recent Visit - mm/dd/yy

7. Referred by - family DDS = 1 farnily MD/institution MD = 2 1 caregiver = 3 teacher/employer = 4 other = 5

F.4NIILkr HISTORY 1 . Hem Problems - no = O

yes = 1

7. Bleeding Problems- no = O yes = 1

3 . Diabetes - no = O yes = 1

4. Hypertension - no = O yes = 1

5. Malignant Hyperthennia - no = O yes = 1

6. Cancer - no = O yes = 1

7. Developmental Disability - no = O y== 1

8. Other - (state)

Mental Retardation - no = O yes = 1 mild = 3 rnoderate = 4 severeiprofound = 5

Down's Syndrome - no = 0 ; yes = 1

Cerebral Palsy - no = O ; yes = 1

Autisrn - no = 0 ; yes = 1

Muscular Dystrophy - no = O ; yes = 1

Multiple Sclerosis - no = O ; yes = 1

Spina Bifida - no = 0 ; yes = 1

Craniofacial Anornaly - no = O ; yes = 1

10. Pneurnonia - no = O ; yes = 1

1 1 . Dysphagia - no = O ; yes = 1

12.. Alzheimer' s/Dementia - n o = O ; yes= 1

13. # of years - (enter value)

14. Psychosis - no = 0; yes = 1

t 5 . Diabetes - no = O insulin dependent = 1 hypoglycemic meds=2 diet controlled = 3

16. # Diabetes Hospitalizations - (enter value)

17. Thyroid Problems - no = O hypothyroid = 1 hyperthyroid = 2

18. Visually Impaired (not correctable with çiasses) - no = 0 ; yes = 1

19. Hearing lmpaired - no = 0; yes = 1

20. Scoliosis - no =O; yes= 1

2 1. Para/Hemi-plegia - no = 0; yes = 1

22. Quadriplegia - no = O; yes = 1

23. Arthritis - no = 0; yes = 1

24. Parkinson's Disease - no = 0; yes = 1

25. Cerebral Vascular Accident - no = 0; yes = 1

26. Traumatic Brain Injury - no = O yes = 1 shunt = 2 accident = 3

27. Tuberous Sclerosis - no = 0; yes = 1

28. Malignant Hyperthermia - no = 0; yes = 1

29. f: MH attacks - (enter value)

30. Hepatic Disease - no = 0; yes = 1

3 1. RenaI Disorder - no = 0; yes = 1

32. Seinire Disorder - no = O yes = 1 well controlled = 3 (a few seinires per month) moderately controlled = 4 (a few seizures per week) uncontrolled = 5 (multiple seizures)

33. Cancer- no=O; yes= 1

34. Allergies - no = 0; yes = 1

35. Environmental Allergies - no = 0; yes = 1

36. Dietary Allergies - no = 0; yes = 1

37. Antibiotic Allergies - no = O; yes = l

38. Local Anaesthetic .4llergies - no = 0; yes = 1

39 Other Allergies - (enter words)

40. Congeenital Heart Disease - no = O yes = 1 VSD = 2 ASD = 3 Tetrology of Fallot = 4 Mitral Valve Prolapse = 5 Eisenmenger's Complex = 6

4 1 . Cyanosis - no = O; yes = 1

42. Rheumatic Fever (known history of diseases vs rheumatic heart disease) no = O ; yes = 1

43. Hepatitis B - no = O; yes = 1

44. Blood Disorders - no = O yes = 1 Haemophilia = 2 Sickle Ce11 Anemia = 3 Thalassemia = 4 Other = 5

45. Behavioural Problems - no = O yes = 1 mild = 3 moderate = 4 severe = 5

46. Other - (state)

NIEDICATIONS AT THE PRESENT TlME

1. -4ny Medications - no = 0; yes = 1

2 Cortisone!Steroids - no = O : yes = 1

1 Analgesics - no = O yes = 1 ASA = 2 acetarninophen = 3 NSAIDs = 4 narcotics/opiods = 5

4. Psychotropic Medications - no = 0; yes = 1

5 . Antihypertensives - no = O ; yes = 1

6. Anticoagulants - no = O ; yes =1

7. Diuretics - no = O ; yes = 1

8. Laxatives - no = 0; yes = 1

9. Seinire Medications - no = 0; yes = 1

10. Muscle Relaxants - no = 0; yes = 1

1 1 . Hormone Replacement Therapy - no = 0; yes - 1

12. Antibiotics - no = 0; yes = 1

13. Blood Transfusions - no = O; yes = l

14. Other - (enter words)

PREC'IOUS SC'RGIC-4L EXPERIENCE

1 Total 5 of general anaesthetics -

2 . Total of dental general anaesthetics -

3 . Day Sur~ery - no = 0; yes = 1

4. # in EOPS - (enter value)

5 . Inpatient for Surgery - no = O yes = 1

6 . 8 in Main OR - (enter value)

DENTAL INFORMATION

1 . Ts in the Clinic - no = O; ?es = 1

7. Who is performing the treatment - staff = 1 postgraduate students = 2 intems = 3 hygienists = 4 undergraduate students = 5

3. Examination - no = 0; yes = 1

4. Radiographs - no = O; yes = 1

5 . Preventative - no = O; yes = 1

6. Restorative - no = 0; yes = 1

7. Endodontics - no = 0; yes = 1

8. Surgical - no = O; yes = 1

9. Prosthetic -no = O; yes = 1

10. Adjunctive periodontal therapy - no = 0; yes = 1

12. Recall Program - not stated = O 3 months = 1 6 months = 2 12 months = 3

13.. Total # of c h i c visits - (enter value)

V - APPENDIX C

FORMS USED FOR COMPUTER DATA ENTRY - MAIN DATA-BASE

1. Background Information Form

2. Familv Historv Form

3. Medical Information Form

4. Medications Form

5. SurPical Ex~eriences Form

6. Dental Information Form

V - APPENDIX D

HOSPITAL DEXTAL OUESTIONNAIRE

1 . Patient's MSHIDg:

2. Patient's DOB (mm/dd/yy):

3 . Are you a regular patient at any other dental office (every 3/6/9 months)? Yes - no -

4. Are you a regular patient at this hospital dental clinic (3/6/9 months)? Y= - no -

5. Have you receive dental treatment at another dental office? yes - no

6. Was it difficult to find a dentist in the community where you live to provide the necessary dental care? yes - *O -

7. Why was it difficult to find a dentist to provide care? distance from the dental office: Yes .-. no - accessibility to a dental office: Yes - no - dentist does not accept disabled patients: yes no - behaviour of the patient: Yes - no - medical problems: Yes - no -

no 8. Did a dentist decline to provide you with dental care? yes

9. If you were treated in a dental clinic, how was dental treatment accomplished? in the dental chair: Yes n o - with restraints: Yes no - with sedation: Yes - no - under general anaesthesia: yes no

10. Have you been for introductory visits to multiple dentists without foltow-up treatment? yes no

1 1. Have you been referred to dental specialist? yes no

12. Have you previously been treated in a hospital Oased dental clinic? yes no

Do you feel there is a better level of dental care provided to the disabled in. a) a hospital setting: yes no b) a private offke: yes no - C ) no difference. yes "0 -

If given a choice would you utilize: a) a private community dental office:yes no b) a hospital c h i c : Yes * O -

Please indicate the distance to this hospital by means of the traveling time scaie: a) 30 min: Yes - *O .-. b) 30 min to I hour: Yes - no - c) 1 to I 1/2 hours: Yes - no - d) 1 1/2 to 2 hours: Y es - no -,

e) greater than 2 hours: Yes - no -

Please indicate the area in which you normally live: a) City of Toronto: yes no - b) Metro Toronto: (Etobicoke, York, North York, East York, Scarborough)

Y= - no - c) Greater Toronto: (Oakville, Mississauga, Brampton, Woodbridge, Vaughan,

Concord, Aurora, Thomhill, Richmond Hill, Unionville, Markharn, Pickering, Oshawa) Y S - no -

d) Elsewhere in Southem Ontario: yes - no - e) Elsewhere in Ontario: yes no -

Why have you chosen to corne to this dental office? a) poor behaviour: Yes - no - b) complicated medical history : Y s - no - c) referral from a doctoddentist: Yes - no - d) referraI from a friend: Yes - no - e) better access than available elsewhere: yes no -

1s the patient cooperative at other medical visits? yes no

Does this patient brush hisher own teeth? yes no

1s it difficult to assist this patient with routine oral hygiene? yes no

Do you believe that this patient has any dental problems at this time? y e s n o -

7 2 Do you feel that the cost of dental care prevents you frorn visiting the dentist

reylarly? yes no -

V - APPENDIX E

LETTER OF ESPLANATION SENT WITH THE QUESTIONSAIRE

Letter to al1 Patients Re~istered in Current Prograrn - for Disabled

Dentistry for the Disabled Date; Mount Sinai Hospital, Faculty of Dentistq. University of Toronto 600 University Ave. Toronto, Ontario M5G 1x5

Dear: Patient of the Mount Sinai Dental Program for the Disabled

As a registered patient in the Mount Sinai Dental Program you have access to a full range of hospital-based dental services. This would include: regular preventive care in our clinic, restorative , prosthetic and surgical care as required both within our clinic or under general anaesthesia in an operating room setting.

In an effort to evaluate our present program we have designed a research project which will involve a review of your past chart record by one of our sta f f and the completion of a questionnaire to determine your views of our program. This shldy will take place during the faIl of 1996 to the winter of 1997.

The information from this study will be used to assist us with the future planning of dental care services for adult with disabilities and the directions which Our undergraduate and postgraduate educational programs should follow.

We would like to include you in the hospital dental program study. Your answen will not be identified by mane, and at no time will your identity be made known. You may decided not to participate in this study. The dental services that you receive from the Mr. Sinai Program will not be affected if you choose not to participate in the study.

Please cornplete the enclosed consent form and rehirn it to Our c h i c office as soon as possible. You may receive a follow-up phone cal1 to determine if you had any comments regarding this sîudy, or any difficulties completing this survey questionnaire.

Thank-you for considering our request. If you have any questions or would like additional information regarding the study please feel free to contact Dr. M. Sigal at 586- 5145

Yours sincerely .

Dr. Michael J. Sigal Director. Dental Program for the Disabled

V - APPENDIX F

CONSENT FORM SENT WITH THE OCESTIONNAIRE

Dental Proeram for the Disabled Studv Consent Form

Please complete this consent form and return it to Our clinic office whether or not you agree to be included in the study. Thank you for your co-operation.

Patient's Name:

Please check one of the following:

( ) Yes, 1 have read the anached letter and will agree to participate in the snidy. 1 understand that 1 may withdraw from the study at any time. The dental services that 1 receive at the Mr. Sinai Hospital will not be affected by participation in the study. Al1 information will by confidential.

( ) No, 1 do not want to participate in the study. 1 understand that the services that I receive at the Mount Sinai Hospital will not be affected by this decision.

Patient's signature:

Parent/Guardian3s signature:

Counselor's Name:

Counselor's signature:

Date:

V - APPENDIX G

SUMNIARP' OF .4NALYSIS FROM RESU'LTS

Table 29 Relationship of mental retardation with autism

The various levels of mental retardation and autism were analyzed and it has been

demonstrated that these variables are independent of each other (P-Value = NS). v

Relations hip o f Nkntal Retardation with Autis rn

Table 30 Relationship of combined mental retardation with autism

The moderate and severe/profound categories were combined and then relared to

autism. It is demonstrated that there is a relaîionship beîween these variables (P-Value =

NS) indicating that increasing severity of mental retardation is not necessarily associated

with autism.

NO Mild

-Mb de rate S e v e ~ / P m f o u n d

Column Totals

I Relations hip o f Combined Mental Retardation with Autis m I

C%sariaie = 9.205

No 366 (97.9%) 437(94.4%) 349 (93.8%) 163 (93.1%) 1315 (95.0%)

Mental Retardation

No Wd

Moderate &Severe/Profound Column Totab

Yes S(2.1Vo) 26(5.60/0) 23 (6.2%) 12 (6.9%) 69 (5.0%)

374(27.0'?40) 463(33.5%) 372 (26.9%) 175 (12.6%) 1384 (100%)

-qme = 9.091 J

DF=2 1

I

P-Vahie = NS

Ro w To ta 1s

I

374 (27.0Yo) 463(33S0) 547 (39.5%) 1384(100?40)

Autis rn

No 366 (97.9%) 437(94.4%) 512 (93.6%) 1315(95.00/0)

Ye s 8 (2.1 %) 26(5.6O) 35 (6.4%) 69(5.00/0)

Table 31 Relationship of mental retardation with pneumonia

The relationship between mental retardation and pneumonia is supponed

statistically (P-Value = 0.00 1 ).

I -. -- - - - -

Relationship of Mental Retardation with Pneumonia

Table 32 Relationship of combined mental retardation with pneumonia

The moderate and severe/profound categories were combined and then related to

pneumonia. It is demonstrated that there is a relationship between these variables

(P-Value < 0.001).

- - - - - - - --

Mental Retardation

I

No M ild

Moderate SevereIProfound Column Totals

1

1 Relationship of Combined Mental Retardation with Pneumonia

Chi-sauare = 17.306 1

- -

Row Totals

374 (27.0%) 463 (33.5%) 372 (26.9%) 175 (12.6%) 1384 (1 00%)

- - - - - - - - - - -- - -

Pneumonia

i Mental Retardation

l

1

No 317 (84.8%) 424 (91 -6%) 345 (92.7%) 162 (92.6%) 1248 (90.2%)

No Mild

Moderate & SevereIProfound Column Totals

,

1

Yes 57 (15.256) 39 (8.4%) 27 (7.3%) 13 (7.4%) 1 36 (9.8%)

Pneurnonia No I Yes

Row Totals

317 (84.8%) 424 (91.6%) 507 (92.6%) 1248 (90.2%)

Chi-square = 17.302

57 (1 5.2%) 39 (8.4%) 40 (7.3%) 136 (9.8%)

I !

374 (27.0%) 463 (33.5%) 547 (39.5%) 1384 (1 00%)

Table 33 Reiationship of mental retardation with dysphagia

The relationship berween mental retardation and dysphagia is not supported

statistically (P-Value = NS).

Relationship of Mental Retardation with Dysphagia 1 ( Mental Retardation 1 Dysp hagia 1 Row Totalç

Mild 1 444 (34.2%)

Yes 28 (7.5%)

Table 34 Relationship of combined mental retardation with dysphagia

The moderate and severe/profound categories were combined and then related to

dysphagia. It is demonstrated that there is not a relationship between these variables

(P-Value = NS) indicating that dysphagia is not necessarily related to increasing severity

of mental retardation,

I Relationship of Combined Mental Retardation with Dysphagia 1 1 Mental Retardation 1 Dysphagia 1 Row Totals 1

No M ild

Moderate 8 SeverelProfound Column Totals

Chi-square = 4.91 9

374 (27%) 463 (33.5%) 547 (39.5%) 1384 (1 00%)

1

1 I

1

No 346 (92.5%) 444 (95.9%) 51 0 (93.2%) 1300 (93.9%)

Yes 28 (7.5%) 19 (4.1 %) 37 (6.8%) 84 (6.1 1)

Table 35 Relationship of mental retardation with Alzheimer's disease

The relationship between mental retardation and Alzheimer's Disease is

supponed staristically (P-Value < 0.00 1 ).

Relationshi p of Mental Retardation with Alzheimer's Disease

1 Mental Retardation 1 Alzheimer's Disease 1 Row Totalç 1

Table 36 Relationship of combined mental retardation with Alzheimer's disease

The moderate and severe/profound categories were combined and then related to

Alzheimer's Disease. It is demonstrated that there is a relationship between these

variables (P-Value < 0.00 1).

Relationship of Combined Mental Retardation with Alzheimer's Disease 1

374 (27%) 463 (33.5%) 372 (26.9%) 175 (12.6%) 1384 (1 00%)

I No Yes

1 Mental Retardation 1 Alzheimer's Disease 1 Row Totals 1

Chi-square = 94.1 33 , i

No 31 8 (85.0%) M ild 1 453 (97.8%)

Moderate 366 (98.4%) SevereIProfound 1 173 (98.9%) Colurnn Totals 1 1310 (94.7%)

56 (1 5.0%) 70 (2.2%) 6 (1.6%) 2 (1.1%) 74 (5.3%)

1

No Mild

Moderate & SevereIProfound Colurnn Totals

Chi-sauare = 94.081 l t

374 (27%) 463 (33.5%) 547 (39.5%) 1384 (1 00%)

I No

318 (85.0%) 453 (97.8%) 539 (98.5%) 131 0 (94.7%)

Yes 56 (1 5.0%) 1 O (2.2%) 8 (1.5%) 74 (5.3%)

Table 37 Relationship of mental retardation with paraplegia

The relationship between mental retardation and paraplegia is supponed

statistically (P-Value < 0.00 1 ).

I -. - - - -- - - - - - pp

Relationship of Mental Retardation with Paraplegia

I Mental Retardation

I -

Mild

1 Column Totals khi-square = 58.453

Parapleg ia 1 Row Totals

No Yes 297 (79.4%) 77 (20.6%) 374 (27.0%)

Table 38 Relationship of combined mental retardation with paraplegia

The moderate and severdprofound categories were combined and then related to

paraplegia. It is demonstrated that there is a relationship between these variables

1 Relationship of Combined Mental Retardation with Paraplegia

1 Mental Retardation 1 Paraplegia

NO I Yes 1

Column Totals 1 1234 (89.2%) 1 150 (1 0.8%) Chi-sauare = 53.373 I ,

Row Totals

Table 39 Relationship of mental retardation with quadriplegia

The relationship beween mental retardation and quadnplegia is supponed

Relationship of Mental Retardation with Quadnplegia

Table 40 Relationship of combined mental retardation with quadriplegia

The moderate and severdprofound categories were wmbined and then related to

quadriplegia. It is demonstrated that there is a relationship between these variables

(P-Value = 0.007 ).

Mental Retardation

L

No Mild

Moderate SeverdProfound Column Totals

1 Relationship of Combined Mental Retardation with Quadriplegia 1

Row Totals

374 (27.0%) 463 (33.5%) 372 (26.9%) 175 (1 2.6%) 1384 1700%)

Quadriplegia

Mental Retardation

1

No Mild

Moderate & Severe/Profound Column Totals

I

No 344 (92.0%) 447 (96.5%) 362 (97.3%) 161 (92.0%) 1314 (94.9%)

- I

Yes 30 (8.0%) 16 (3.5%) I O (2.7%) 14 (8.0%) 70 (5.1 %)

Row Totals

1

374 (27%) 463 (33.5%) 547 (39.5%) 1384 (1 00%)

Chi-square = 9.827 l

Quadripleg ia

,

No 344 (92.0%) 447 (96.5%) 523 (95.6%) 1314 (94.0%)

Yes 30 (8.0%) 16 (3.5%) 24 (4.4%) 70 (7.1)

Table 41 Relationship of mental retardation with scoliosis

The relationship between mental retardation and scoliosis is supported statistically

(P-Value < 0.00 1 ).

Relationship of Mental Retardation with Scoliosis

Mental Retardation Scoliosis Row Totals

374 (27%)

Table 42 Relationship of combined mentai retardation with scoliosis

The rnoderate and severe/profound categories were combined and then related to

scoliosis. It is demonstrated that there is a relationship between these variables

(P-Value < 0.00 1 ).

Relationship of Combined Mental Retardation with Scoliosis

Mental Retardation

No Mild

Moderate & SevereIProfound Colum n Tota 1s

Chi-square = 23.074 D F = 2 P-Value c 0.00 1

Row Totals

374 (27%) 463 (33.5%) 547 (39.5%) 1384 (1 00%)

Scoliosis

I !

I I

No 362 (96.8%) 446 (96.3%) 494 (90.3%) 1302 (94.1 %)

I

Yes 12 (3.2%) 17 (3.7%) 53 (9.7%) 82 (5.0%)

\ 1

Table 43 Relationship of mental retardation with tuberous sclerosis

The relationship between mental retardation and niberous sclerosis is supported

statistically (P-Value -= 0.00 1 ). It is necessary to acknowledçe that the statistics ma); be

inaccurate due to the low numbers of patien~ having tuberous sclerosis.

r Relationship of Mental Retardation with Tuberous Sclerosis I 1 Mental Retardation 1 Tuberous Scierosis 1 Row Totalç

t No I Yes

f

P-Value < 0.00 1 l 1

1

4 cells with expected counts l e s than 5.0

1 .

No M ild

Moderate SevereIProfound Column Totals

r

Table 44 Relationship of combined mental retardation with tuberous sclerosis

The moderate and severe/profound categorks were combined and then related to

tuberous sclerosis. It is demonstrated that there is a relationship between these variables

(P-Value = 0.004).

Chi-sauare = 22.279 l I

-

374 (1 00%) 462 (99.8%) 369 (99.2%) 169 (96.6%) 1374 (99.3%)

Relationship of Combined Mental Retardation with Tuberous Sclerosis I

O 1 (0.2%) 3 (0.8%) 6 (3.4%) 10 (0.7%)

1

13 Ceils with ex~ected counb than 5.0 1 1

374 (27%) 463 (33.5%) 372 (26.9%) 175 (1 2.6%) 1384 (1 00%)

Mental Retardation

I

No Mild

Moderate & SevereIProfound Column Totals

- - - - - --

Row Totals

374 (27%) 463 (33.5%) 547 (39.5%) 1384 (1 00?4n\

Tuberous Sclerosis

No 374 (1 00%) 462 (99.8%) 538 (98.4%) 1374 (99.3%)

Yes O

1 (0.2%) 9 (1.6%) 10 (0-7%\

Table 45 Relationship of mental retardation with seizure disorders

The relationship between mental retardation and seizure disorders is supponed

statistically (P-Value < 0.00 1 ).

r- -- - -- - - - --

Relationship of Mental Retardation with Seizure Disorden 1

DF = 12 1

P-Value < 0.001 1 ( 1

1 cell with expected caunts l e s than 5.0 t l l

Mental Retardation

No Mild

Moderate SevereIProfound Column Totals

Table 46 Relationship of combined mental retardation with seizure disorders

The moderate and severelprofound categories were combined and then related to

Chi-square = 11 5-41 Si

seinire disorders. It is demonstrated that there is a relationship between these variables

Row Totals

374 (27%) 463 (33.5%) 372 (26.9%) 175 (1 2.6%) 1384 (1 00%)

Seizure Disorders

Relationship of Combined Mental Retarddori with Seizute Disorden 1

Mental Retardation Seizure Disorders 1 Row Totals

l

Uncontrolled

5 (1 -3%) 2 (0.4Oh) 6 (1 -6%) 10 (5.7%) 23 (1.7%)

No

309 (82.6%) 358 (77.4%) 230 (61.8%) 85 (48.6%)

No

Mild Moderate &

SevereiProfound

Column Totals

Control 5 (1.3%) 9 (1 -9%) 19 (5.1 %) 16 (9.1 %)

Yes

9 (2.4%) 16 (3.5%) 16 (4.3%) 15 (8.6%)

Chi-auare = 89.540 ; 1

49 (3.5%)

Well Contro 1 led 46 (1 2.4%) 78 (1 6.8%) 101 (27.2%) 49 (28.0%)

982 (71 -0%) 1 56 (4.0%)

. 374 (27%)

463 (33.5%)

547 (39.5%)

1384 (1 00%)

No

309 (82.6%)

358 (77.4%)

31 5 (57.6%)

982 (71 .O%)

274 (1 9.8%)

Yes

9 (2.4%)

16 (3.5%)

31 (5.7%)

56 (4.0%) -

u

Unmntrolled

5 (1.3%)

2 (0.4%)

16 (2.9%)

23 (1.7%)

Well Controlled 46 (12.4%)

78 (1 6.8%)

150 (27.4%)

274 (1 9.8%)

Control 5 (1 -3%)

9 (1.9%)

35 (6.4%)

49 (3.5%)

Table 47 Relationship of mental retardation with behaviour problems

The relationship between mental retardation and behaviour problems i i supported

statistically (P-Value < 0.001) indicating that havinç mental retardation is a risk for also

having behaviour problems.

Table 48 Relationship of combined mental retardation with behaviour problems

The rnoderate and severdprofound categories were combined and then related to

behaviour problems. It is demonstrated that there is a relationship beiween these

variables (P-Value < 0.001) indicating that having mental retardation is a nsk for also

having behaviour problems.

Relationship of Mental Retardation with Behaviour ProbIems

Mental Retardation

No Mild

Moderate SeverelProfound Column Totals

-- - - - -- - - - - -

Relationship of Combined Mental Retardation with Behaviour Problems

Chi-square = 489.729 I 1 ! D F = 9 1 , I

1 Mental Retardation

No l

Mild &

SevereIProfound Column Totals

Row Totals

374 (27%) 463 (33.5%) 372 (26.9%) 175 (12.6%) 1384 (100%)

Behaviour Problems I

No 1 Mild 31 O (82.9%) 1 21 (5.6W) 280 (60.5%) 1 120 (25.9%) 109 (29.3%) 1 66 (1 7.7%) 33 (18.8%) 1 15 (8.6%) 732 (52.9%) 1 222 (16.0%)

Behaviour Problems

Chi-square =435.376 j I 1 j D F = 6 I t

Row Totals

374 (27%)

463 (33.5%)

547 (39.5%)

1384 (1 00%)

No

310 (82.9%)

280 (60.5%)

142 (26.0%)

732 (52.9%)

Moderate 25 (6.7%) 54 (1 1.7%) 143 (38.5%) 67 (38.3%) 289 (20.9%)

Mild Moderate i Severe

21 (5.6Oh) j 1 25 (6.7%) / 18 (4.8%)

120 (25.9%) i 54 (1 1.7%) 9 (1 -9%)

81 (14.8%) j 210 (38.4%) / 114 (20.8%) I

222 (16.0%) 1 289 (20.9%) / 141 (1 0.2%)

Severe 18 (4.8%) 9 (1 -9%) 54 (14.5%) 60 (34.3%) 141 (10.2%)

Table 19 Relationship of autism with pneumonia

The relationship between autisrn and pneumonia is supported statistically

(P-Value = 0.005).

1 - - -- -

Relationship of Autism with Pneumonia 1

Table 50 Relationship of autism with dysphagia

There is no apparent relationship between autism and dysphagia (P-Value = NS).

Autism

No Yes

Column Totals

I Relationship of Autism with Dysphagia I

Chi-square = 7.914 t l

DF=2 I ,

Pneumonia Row Totals v

P-Value = NS l 1

!

1 cell with expected count less than 5.0 I I 1

No 1 179 (89.7%) 69 (100%)

1248 (90.2%)

- -

Autisrn

L

No Yes

Column Totals

Yes I

136 (10.3%) 1 1315 (95.0%) O 1 69 (5.0%)

136 (9.8%) 1 1384 (100%)

Chi-square = 0.009 1 l l 1

l

D F = 1 ! I

Row ~ o t a l s

1315 (95.0%) 69 (5.0%)

1384 (100%)

-- - --

~ ~ s ~ h a g i a r 1

No 1235 (93.9%) 65 (94.2%)

1 300 (93.9%)

Yes 80 (6.1 %) 4 (5.8%) 84 (6.1 %)

Table 5 1 Relationship of autisrn with Alzheimer's disease

The relationship benveen autism and -4lzheirner's disease is not supported

statistically (P-Value = NS).

Relationship of Autisrn with Alzheimer's Disease 1

- -- cell with expected count less than 5.0 O l

Autism

No Yes

Column Totals I

Table 52 Relationship of autism with scoliosis

There is no apparent relationship between autism and scoliosis (P-Value = NS),

however, this information could no be confirmed statistically due to the low numben of

individuals with both of these disorders.

-

1 Relationship of Autism with Scoliosis - 1

Chi-square = 0.860

1 Autism 1 Swliosis ) R o i ~ o t a l s 1 -

Row Totals

1

1315 (95.0%) 69 (5.0%)

1384 (1 00%)

Alzheimer's Disease No

1243 (94.5%) 67 (97.1%) 131 O (94.7%)

--

P-Value =-invalid 1

l I

1 1 cell with emected count less than 5.0 I

Yes 72 (5.5%) 2 (2.9%) 74 (5.3%)

No Yes

Column Totals Chi-sauare = 1.535 ! I 1

131 5 (95.0%) 69 (5.0%) 1384 (1 00%) I

I

No 1235 (93.9%) 67 (97.1%)

7 302 (94.1 %)

Yes 80 (6.1%) 2 (2.9%) 82 (5.9%)

Table 53 Relationship of autism with tuberous sclerosis

There is no apparent relationship between autism and scoliosis (P-Value = NS),

however, this information could no be confimed statistically due to the low numbers of

individuals with both of these disorders.

1 Relationship of Autism with Tuberous Sclerosis

1 cell with expected count less than 5.0 i ,

Autism

I

No Yes

Column Totals

Table 54 Relationship of autism with seizure disorders

There is no apparent relationship between autism and seizure disorders

(P-Value = NS).

1 Relationship of Autism wÏth Seizure Disorders 1

Chi-square =OS35 a I

1 Autism 1 Seinire Disorders 1 Row Totals 1

Row Totals

131 5 (95.0%) 69 (5.0%) 1384 (1 00%)

Tuberous Sclerosis No

1306 (99.3%) 68 (98.6%) 1374 (99.3%)

- . -

P-Value = NS l ! 4 1 1

3 cells with ex~ected counk less than 5.0 a l I

I

Yes 9 (0.7%) 1 (1 -4%) 10 (0.7%)

L

No Yes

Column TotaIs Chi-square = 5.207I I , ! I

D F = 4 I 1 I

1 31 5 (95.0%) 69 (5.0%)

1384 (1 00%) l

No

934 (71 .O%) 48 (69.6%) 982 (71 .O%)

Yes

52 (4.0%) 4 (5.8%) 56 (4.0%)

Well Controlled

257 (1 9.6%) 17 (24.6%)

274 (1 9.8%)

Contrat 49 (3.7%)

O 49 (3.5%)

Uncontrolled

23 (1.7%) O

23 (1.7%) -

Table 55 Relationship of autism with behaviour problems

There was an apparent relationship between autism and behaviour problems

(P-Value = 0 .O0 1 )

Relationship of Autism with Behaviour Problems

Autisrn 1 Behaviour Problems 1 Row Totals

t No 1 Mild 1 Moderate 1 Severe 1

Table 56 Relationship of pneumonia with dysphagia

The relationship between pneunonia and dysphagia is supported statistically

b

No Yes

Column Totals

I -- - --

Relationship of Pneumonia with Dysphagia - - - -

Pneumonia Dysphag ia Row Totals

No Yes No 1 182 (94.7%) 66 (5.3%) 1248 (90.2%)

Yes 1 18 (86.8%) 18 (1 3.2%) 136 (9.8%) Column Totals 1300 (93.9%) 84 (6.1 %) 1384 (1 00%)

Chi-sauare = 17.225

712 (54.1 %) 20 (29.0%) 732 (52.9%)

374 (27%) 463 (33.5%) 1384 (1 00%)

m -- - J

- -

207 (15.8%) 15 (21.7%)

222 (16.0%)

267 (20.3%) 22 (31.9%) 289 (20.9%)

129 (9.8%) 12 (1 7.4%) 141 (1 0.2%)

Table 57 Relationship of pneumonia with Alzheimer's disease

There is no apparent relationship between pneumonia and .4lzheimer's disease

(P-I'aIue = NS).

I - - -

Relationship of Pneumonia with Alzheimer's Disease

Table 58 Relationship of pneumonia with paraplegia

There is no apparent relationship between pneumonia and paraplegia

Pneumonia

No Yes

Cofurn n Totals

(P-Value = NS)

Relationship of Paraplegia with Pneumonia

Chi-s~uare = 0.481

Row Totals

1

1248 (90.2%) 136 (9.8%)

1384 (1 00%)

Alzheimer's Disease

No 1 183 (94.8%) 127 (93.4%) 1310 (94.7%)

Paraplegia

No Yes

Column Totals

Yes 65 (5.2%) 9 (6.6%) 74 (5.3%)

Chi-sauare = 0.897 l l I

Row Totals

1234 (89.2%) 1 50 (1 0.8%) 1 384 (1 00%)

Pneumonia No

1 1 16 (90.4%) 1 32 (88.0%) 1248 (90.2%)

Yes 1 18 (9.6%) 18 (1 2.0%) 136 (9.8%)

Table 59 Relationship of pneumonia with quadriplegia

There is an apparent relationship pneumonia and quadriplegia (P-Value = O00 1)

I - -- -

Relationship of Quadriplegia with Pneumonia - - - --

( Quadriplegia 1 Pneumonia

I I NO I Yes Row Totals

No Yes

Column Totals

Table 60 Relationship of pneumonia with scoliosis

There is no apparent relationship between pneumonia and scoliosis

(P-Value = NS)

1 193 (90.8%) 55 (78.6%) 1248 (90.2%)

1 Relationship of Pneumonia with Scoliosis

121 (9.2%) 15 (21 -4%) 136 (9.8%)

Pneumonia

No Yes

Column Totals I

Chi-s~uare = 0.164 J , I

Row Totals

1248 (90.2%) 136 (9.8%)

1384 (1 00%)

Swliosis I

No 1173 (94.01) 129 (94.9%) 1302 (94.1 9'0)

Yes 75 (6.0%) 7 (5.1 %) 82 (5.9%)

Table 61 Relationship of pneumonia with tuberous sclerosis

There is no apparent relationship between pneumonia and tuberous sclerosis

(P-Value = NS), however, this information could notbe confirmed statistically due to the

low numbers of individuals with both of these disorders.

1 Relationship of Pneumonia with Tuberous Sclerosis 1 1 heurnonia 1 Tuberous Sclerosis 1 Row Totals 1

DF= 1 P-Value = invalid 1

1 cell with expected counts Iess than 5.0 ~ I

No Yes

Colurnn Totals

Table 62 Relationship of pneumonia with seizure disorders

There is no apparent relationship between pneumonia and seizure disorders

(P-Value = NS).

1 Relationship of Pneumonia with Seizure Disorders 1

Chi-sauare = 0-000 :

1 Pneumonia 1 Seirure Disorders ( Row Totals 1

1

1248 (90.2%) 136 (9.8%) 1384 (1 00%)

No 1239 (99.3%) 135 (99.3%) 1374 (99.3%)

Yes 9 (0.7%) 1 (0.7%)

10 (0.7%)

DF=4 ! 1 1 P-value= NS t j I 1 I

,

2 cells with expected counts iess than 5.0 I I

No Yes

Column Totals Chi-square = 2.759 I 1

374 (27%) 463 (33.5%) 1 384 (1 00%)

C

No

885 (70.9%)

Yes

53 (4.3%) 97 (71.3%) ( 3 (2.2%) 982 (71 -0%) 1 56 (4.0%)

Uncontrolled

19 (1 5%)

Well Controlled

247 (19.8%) 4 (2.9%) 23 (1.7Y0)

Control 44 (3.5%)

27 (19.9%) 274 (1 9.8%)

5 (3.7%) 49 (3.5%)

Table 63 Relationship of pneumonia with behaviour problems

There is an apparent relationship pneumonia and behaviour disorden

(P-Value < 0.00 1 ).

I - . - - - - - . - - - -- - -

Relationship of Pneumonia with Behaviour Problems 1

Table 64 Relationship of dysphagia with Alzheimer's disease

The relationship between dysphagia and Alzheimer's disease is not supported

Pneumonia

No Yes

Column Totals

statistically (P-Value = NS).

1 Relationship of Dysphagia with Alzheimer's Disease

Chi-square = 24.145 - ,

Row Totals

374 (27%) 463 (33.5%) 1384 (1 00%)

Behaviour Problems I

P-Value = NS l I 1 cell with ex~ected counts l e s than 5.0 i i

Dysphagia

Moderate 1 Severe 274 (22.0%) 1 132 (10.6%) 15 (11.0%) 1 9 (6.6%)

289 (20.9%) 1 141 (10.2%)

No 633 (50.7%) 99 (72.8%) 732 (52.9%)

Mild 209 (16.7%)

13 (9.6%) 222 (16.0%)

Row Totals Alzheimer's Disease I

1 300 (93.90/0) 84 (6.1 %)

1384 (1 00%)

No

Chi-sauare = 5.091 l l

Yes 65 (5.0°h) 9 (1 0.7%) 74 (5.3%)

r

No Yes

Column Totals

1235 (95.0%) 75 (89.3%)

131 0 (94.7%) I

Table 65 Relationship of dysphagia with paraplegia

There is an apparent relationship between dysphagia and paraplegia

(P-Value < 0.00 1 ).

I Relationship of Paraplegia with Dysphagia 1 Parapleg ia Dysphagia Row Totals

1

No Yes No 1169 (94.7%) 65 (5.3%) 1234 (89.2%)

- Yes 131 (87.3%) 19 (12.7%) 150 (1 0.8%) Column Totals 1300 (93.9%) 84 (6.1 %) 1384 (1 00%)

Chi-square = 12.844 i

D F = 1

Table 66 Relationship of dysphagia with quadriplegia

There is an apparent relationship between dysphagia and quadriplegia

(P-Value < 0.001).

Cornparison of Quadriplegia and Dysphagia 1

D F = l 1 I

1

1 P-Value < 0.001 l

i I 1

1 ceIl with expected counts less than 5.0 I I

Quadripleg ia

No Yes

Column Totals

Row Totals

1314 (94.9%) 70 (5.1 1)

1384 (100%)

Dysphagia No

1254 (95.4%) 46 (65.7%)

1300 (93.9%)

Yes 46 (4.6%) 24 (34.3%) 84 (6.1 %)

Table 67 Relationship of dysphagia with scoliosis

There is an apparent relationship between dysphagia and scoliosis

r- --

--

Relationship of Dysphagia with Scofiosis - --

Scoliosis 1 Row Totals

1 NO I Yes I

1 Yes 1 71 (84.5%) 1 13 (15.5%) 1 84 (6.1 %) 1 Column Totals 1 1302 (94.1 56) 1 82 (5.9%) 1 1384 (100%)

1 cell with expected counts less than 5.0 i

Table 68 Relationship of dysphagia with tuberous sclerosis

There is no apparent relationship between dysphagia and tuberous sclerosis

(P-Value = NS) however, this information could no be wnfirmed statisticaily due to the

low numbers of individuals with both of these disorders.

I - - - - -

Relationship of ~ ~ s p h a ~ i a with Tuberous Sclerosis -1

DF=1 1

1 1

P-Value = invalid I 1

I 1

Dysphagia

No Yes

Column Totals

- - - 1 1

1 cell with expected counts less than 5.0 i i 1

ROW Totals

1 300 (93.9%) 84 (6.1 %) 1384 (1 00%)

Chi-souare = 0.651 i

Tuberous Sclerosis -

t

No 1290 (99.2%) 84 (100%) 1374 (99.3%)

- I

Yes I O (0.8%)

O 10 (0.7%)

Table 69 Relationship of dysphagia with seizure disorders

There is an apparent relationship between dysphaçia and seinire disorders

(P-Value = 0.017) however, this information has minimal statistical support due to the

low nurnbers of individuals with both of these disorders.

1 Relationship of Dysphagia with Seizure Disorders 1 1 Dysphagia 1 Seinire Disorders 1 Row Totals (

3 cells wdh expected counts l e s than 5.0 1

No Yes

Column Totals

Table 70 Relationship of dysphagia with behaviour problems

There is no apparent relationship between dysphagia and behaviour prob lems

(P-Value = NS).

1 Relationship of Dysphagia with Behaviour Problems 1

Chi-square = 12.81 3 : , D F = 4

1

1300 (93.9%) 84 (6.1 %)

1384 (1 00%)

No

934 (71 -8%)

48 (57.1 %) 982 (71 -0%)

Mental Retardation

I

No Yes

Column Totals

52 (4.0%) 4 (4.8%) 56 (4.0%)

Chi-square = 2.340 DF = 3

-- - - - - - -

~-Value = NS

Weil Controlled

252 (1 9.4%) 22 (26.2%) 274 (1 9.8%)

I

Row Totals

374 (27%) 463 (33.5%) 1384 (1 00%)

Behaviour Problems

No 687 (52.8%) 45 (53.6%) 732 (52.9%)

Control 43 (3.3%) 6 (7.1 %)

49 (3.5%)

Uncontrdled

1 9 (1.5%) 4 (4.8%) 23 (1.7%)

Mild 21 3 (16.4%) 9 (10.7%)

222 (16.0%)

Moderate 268 (20.6%) 21 (25.0%)

289 (20.9%)

Severe 132 (1 0.2%) 9 (10.7%)

141 (10.2%)

Table 71 Relationship of Alzheimer's disease with scoliosis

The relationship between .4lzheimer's disease and sco liosis is nor supponea

statistically (P-Value = NS).

r Relationship of Alzheimer's Disease with Scoliosis

- - 1

1 celi with expected counts less the 5.0 l 1 l

Alzheimer's Disease

No Yes

Column Totals

Table 72 Relationship of Alzheimer's disease with tuberous sclerosis

There is no apparent relationship between Alzheimer's disease and hiberous

sclerosis (P-Value = NS) however, this information has non-validated statistical support

due to the Iow numbers of individuais with both of these disorders.

1 ~e la t ionsh i~ of Alzheimer's Disease with Tuberous Sclerosis 1

Chi-square = 2.934

Row Totals

131 0 (94.7%) 74 (5.3%) 1384 (1 00%)

Scoliosis

L

DF = 1 I 0 I

1

P-Value = invalid i ! t

II cell with expected counts less the 5.0 1

1

No 1229 (93.8%) 73 (98.6%)

1 302 (94.1 %)

Alzheimer's Disease

No Yes

Column Totals

Yes 81 (6.2%) 1 (1.4%) 82 (5.9%)

Chi-sauare =0.569 t 1 !

Row Totals

1310 (94.7%) 74 (5.3%)

1384 (1 00%)

Tuberous Sclerosis L

No 1300 (99.2%) 74 (100%)

1374 (99.3%)

J

Yes 10 (0.8%)

O 10 (0.7%)

Table 73 Relationship of Alzheimer's disease with seizure disorders

There is no apparent relationship between Alzheimer's disease and seinire

disorders (P-Value = NS).

Relationship of Aizheirner's Disease with Seizure Disorders 1

Table 74 Relationship of Alzheimer's disease with behaviour problems

There is no apparent relationship between Alzheimer's disease and behaviour

problems (P-Value = NS).

Alzheimer's Disease

No Yes

I - -

Relationship of Alzheimer's Disease with Behaviour Problems 1

Row Totals

@

131 O (94.7%) 74 (5.3%)

Seizure Disorders

Alzheimer's Disease

1384 (1 00%) Chi-square = 3.31 1 t ! I

D F = 4 \ I

I I

P-Value = NS I

3 cells wi!h expected cou& l e s than 5.0

Unconbolled

22 (1.7%) 1 (1.4%)

23 (1.7%) -

Behaviour Problems

1310 (94.7%) 74 (5.3%)

1384 (1 00%)

- - - - -

No Yes

Column Totals

No

924 (70.5%) 58 (78.3%)

Column Totals 1 982 (71 .O%)

Row Totals

Chi-sauare = 6.214 i 1

WelI Controlled

261 (1 9.9%) 13 (1 7.5%)

274 (1 9.8%)

Yes

55 (4.2%) 1 (1 -4%)

56 (4.0%)

L

Control 48 (3.7%)

1 (1 -4) 49 (3.5%)

No 693 (52.9%) 39 (52.7%) 732 (52.9%)

Mild 210 (16.0%) 12 (16.2Oh)

222 (16.0%)

Moderate 279 (21 -3%) 10 (13.5%) 289 (20.9%)

Severe 128 (9.8%) 13 (1 7.6%) 141 (1 0.2?4)

Table 75 Relationship of scoliosis with tuberous sclerosis

The relationship between scoliosis and tuberous sclerosis is not supponed

statistically (P-Value = NS), however. this information has non-validated statistical

support due to the low numbers of individuals with both of these disorders.

I Relationship of Scoliosis with Tuberous Sclerosis I

P-Value = invalid ! 1 l I

1 cell with expected counts less the 5.0 I

-

Scoliosis

I

No Yes

Column Totals L

Table 76 Relationship of scoliosis with seizure disorders

There is an apparent relationship between scoliosis and seimre disorders

(P-Value < 0.001).

1 Relationship of Scoliosis with Seizure Disorders 1

Chi-sauare = 0.300 I

1 Scoliosis 1 Seizure Disorders 1 RowTotals 1

- - - - - -

Row Totals

1302 (94.1%) ' 82 (5.9%) 1384 (1 00%)

L

--

Tuberous Sclerosis No

1293 (99.3%) 81 (98.8%) 1374 (99.3%)

l P-Value < 0.00 1 1 ,

3 cells with expected counts l e s than 5.0 1

i ! I

Yes 9 (0.7%) 1 (1 -2%)

I O (0.7%)

No Yes

Column Totals Chi-sauare = 22.3961 I

1302 (94.1 %)

82 (5.9%) 1384 (1 00%)

Uncontrolled

21 (1 -6%)

2 (2.4%) 23 (1.7%)

No

942 (72.4%) 40 (48.8%) 982 (71 .O%)

50 (3.8%) 6 (7.3%) 56 (4.0%)

Well ~ o n t r o ~ ~ e d

247 (1 9.0%) 27 (32.9%) 274 (1 9.8%)

Control 42 (3.2%) 7 (8.5%)

49 (3.5%)

Table 77 Relationship of scoliosis with behaviour problems

There is an apparent relationship berween scoliosis and behaviour problems

(?-Value < 0.00 1).

Relationship of Scoliosis with Behaviour Problems I

Table 78 Relationship of tuberous sclerosis with seizure disorders

The relationship between tuberous sclerosis and seizure disorders is not supported

statistically (P-Value = NS), however, this information has non-validated statistical

support due to the low numbers of individuals with both of these disorders.

Scoliosis

No Yes

Column Totals v

Tuberous Sclerosis Seizure Disorders Row Totals

1

P-Value = invalid i I 1 I

4 cells with expected counts less than 5.0 l

Chi-square = 28.551 D F = 3 ,

l 1

P-Value < 0.001

Row Totals

1302 (94.1 %) 82 (5.9%)

1384 (100%)

Behaviour Problems

No 702 (53.9%) 30 (36.6%)

732 (52.9%)

Mild 215 (16.5%)

7 (8.5%) 222 (16.0%)

Moderate 264 (20.3%) 25 (30.5%) 289 (20.9%)

Severe 121 (9.3%) 20 (24.4%) 141 (10.2%)

Table 79 Relationship of tuberous sclerosis with behaviour problems

There is no apparent relationship between tuberous sclerosis and behaviour

prob lems (P-Value = NS), however, this information has non-validated statistical support

due to the low numbers of individuals with both of these disorders.

Table 80 Relationship of seizure disorders with paraplegia

Relationship of Tuberous Sclerosis with Behaviour Probiems

The relationship between seizure disorden and paraplegia is not supported

statistically (P-Value = NS) .

Row Totals

1374 (99.3%) I O (0.7%)

1384 (100%)

Tu berous Sclerosis

No Yes

Colurnn Totals Chi-square = 8.644 : 1 I

D F = 3 I 1 l l T

P-Value = NS f 1 l I 1

3 cells with expected counts less the 5.0 I i

Behaviour Problems

Relationship of Paraplegia with Seizum Disorders

Paraplegia

No Yes

Column Totals

Severe 139 (10.1 %) 2 (20.0%)

141 (10.2%)

Moderate 284 (20.7%)

5 (50.0%) 289 (20.9%)

No 731 (53.2%)

1 (10.0%) 732 (52.9%)

Seizure Disorders Row Totals L

Mild 220 (16.0%)

2 (20.0%) 222 (16.0%)

Chi-square = 11 .O511 --

I 1

No

890 (72.1 %) 92 (61 -3%) 982 (71 .O%)

D F = 4 I 1 l l

P-Value = NS ! l I 1 I I

1 cell with expected counts less than 5.0 i 1

Yes

49 (4.0%) 7 (4.7%)

56 (4.0%)

Well Controlled

233 (1 8.9%) 41 (27.3%)

274 (19.8?40)

Moderate Control

40 (3.2%) 9 (6.0%)

49 (3.5%)

Uncontrolled

îî (1.8%) 1 (0.7%)

23 (1 -7%)

1234 (89.2%) I

150 (1 0.8%) 1384 (1 00%)

Table 81 Relationship of seizure disorders with quadriplegia

There is an apparent relationship between seizure disorders and quadriplegia

(P-Value = 0.0 1 1 ) however, this information has minimal statistical suppon due to the

Iow numbers of individuals with both of these disorders.

1 Relationship of Quadriplegia with Seizure Disorders 1 1 Quadriplegia 1 Seizure Disorders

I Yes 1 40 (57.1°h) I 1 i

I I I m

I . .- , j42 (71 -7%) 1 55 (4.2%) 253 (1 92%) 43 (3.3%) 21 (1.6%) 131 4 (94.9%)

(i .4%) 21 (30.0%) 6 (8.6%) 2 (2.9%) 70 (5.1 %) 1 Column Totals i 982'[71.0%1156 (4.0%) 274 (1 9.8%) 49 (3.5%) 23 (1.7%) 1384 (1 00%)

'

P-Value = 0.01 1 3 cells wîth exwcted counts less than 5.0 I 4

1

Table 82 Relationship of seizure disorders with behaviour problems

The relationship between seizure disorden and behaviour problems is supported

statisticaily (P-Value = 0.00 1).

1 Relationship of Seizure Disorden with ~ehaviour~~mblerns 1 Seizure Disorders

No Yes

Mildly Controlled Moderate Control

Uncontrolled Column Totalç

Row Totals

982 (71 .O%) 56 (4.0%)

274 (19.8%) 49 (3.5%) 23 (1 -7%)

1384 (1 00%)

Behaviour Problems

Chi-sauara = 31.918 1 ! I I

No 555 (56.5%) 24 (42.9%) 123 (44.9%) 19 (38.8%) 11 (47.8%)

732 (52.9%)

Moderate 1 77 (1 8.0%) 18 (32.1 %) 74 (27.0%) 16(32.7%) 4 (1 7.4%)

289 (20.9%)

m Mild 162 (16.5%) 8 (14.3%)

41 (1 5.0%) 8 (16.3%) 3 (13.0%)

222 (1 6.0%)

Severe 88 (9.0%) 6 (1 0.7%) 36 (13.1%) 6(12.2%) 5 (21 .a%)

141 (1 0.2%)

Table 83 Relationship of behaviour problems with paraplegia

The relationship between behaviour problems and paraplegia is not supponed

statistically (P-Value = NS).

1 Relationship of Paraplegia with Behaviour Problems 1

Table 84 Relationship of behaviour problems with quadriplegia

There is no apparent relationship between behaviour problems and quadnplegia

(P-Value = NS),

Paraplegia

I

No Yes

Column Totals

1 Relationsfiip of Quadriplegia with Behaviour Problems 1 1 Quadriplegia 1 Behaviour Problems 1 Row Totals 1

Chi-square = 8.733 , I 1

D F = 3

1 No 1 Mild 1 Moderate 1 ~ e v e r e 1

Row Totals

1234 (89.2%). 150 (1 0.8%) - 1384 (100%)

Behaviour Problerns No

637 (51 -6%) 95 (63.3%)

732 (52.9%)

Yes Column Totals

Mild 207 (16.8%) 15 (10.0%)

222 (16.0%)

41 (58.6%) 732 (52.9%)

Moderate 264 (21.4%) 25 (16.7%)

289 (20.9%)

I

Severe 126 (1 0.2%) 15 (10.0%) 141 (1 0.2%)

8 (1 1.4%) 222 (16.0%)

I

13 (18.6%) 289 (20.9%)

Chi-square = 1.727! , I , D F = 3 1

8 (1 1.4%) d41 (10.2%)

1

70 (5.1 %) 1384 (100%)

I ! ?

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