‘Who are our patients?’ A Socio-Demographic Profi le of Head and Neck Cancer Patients

Report

‘Who are our patients?’ A Socio-Demographic Profi le of Head and Neck Cancer Patients

Ms Anne Wilson • Mr Hamish Holewa • Dr Pam McGrath

IPP-SHR is a collaborative research initiative with the primary aim to examine and document the human experience of serious illness (both physical and mental). The primary aim of this international program in research is to examine and document the human experience of serious illness (both physical and mental). IPP-SHR is a broad program addressing a wide range of topic areas including: haematology/oncology; mental health; palliative care; acute medicine; bioethics; rural and remote health; Indigenous health; spirituality; paediatrics; birth studies; and service delivery evaluation.

The program is concerned with contributing to the development of psycho-social services that assist people to deal with the many challenges associated with significant physical and/or mental health events. The core work is to ‘make a difference’ through research, publication, education and collaboration.

© International Program of Psycho-Social Health Research. 2011 This work is copyright. Apart from any use as permitted under the Copyright Act 1968, no part may be reproduced without prior written permission from the International Program of Psycho-Social Health Research. Requests and enquiries can be directed to Dr Pam McGrath, International Program of Psycho-Social Health Research, Griffith University, PO Box 1307 Kenmore Q 4069.

Suggested citationWilson, A., Holewa, H. & McGrath, P. (2011) “Who are our Patients?” A Socio-Demographic Profile of Newly Referred Patients to the Princess Alexandra Hospital Head and Neck Clinic, International Program of Psycho-Social Health Research (IPP-SHR), Australia. 2nd Edition

Social Work Department, Princess Alexandra Hospital, Queensland Health, Brisbane, Queensland, Australia

AuthorsMs Anne Wilson, Mr Hamish Holewa, Dr Pam McGrath

AcknowledgementsThe authors would like to thank the staff at the Social Work Department and at the Head and Neck Clinic, Princess Alexandra Hospital. IPP-SHR acknowledges the support of the Institute of Health and Social Sciences and the Faculty of Sciences, Health and Engineering, CQUniversity and the Centre of National Research on Disabilty and Rehabilitation Medicine, Griffith Health Institute, Griffith University.Debra Cassidy, Graphic Designer, Princess Alexandra Hospital.

The authors acknowledge team members contributing to this report including: Ms Sue Cumming, Ms Bo McGrath and Ms Nicole Rawson-Huff.

The research team would like to thank Professor William Coman, Ms Simone Cahill, Ms Jane Whelan, Ms Glenda Henderson, Ms Angela Currie, Ms Louise Edgeworth and Dr. Anthony Morley for their assistance.

Design template and layout prepared in consultation with Black pen® Australia (07) 3105 2808

Table of Contents

Introduction 1

The Head and Neck Clinic, Princess Alexandra Hospital 2

IPP-SHR Practitioner Researcher Scheme 2

Methodology 2

Constraints 3

Chapter 1 | Socio Demographic Profile 5

Overall Demographics for Total Patient Cohort 6

· Age 6

· Gender 7

· Marital status 7

· Education 8

· Accommodation type 8

· Geographical location 9

· Indigenous People 10

· Employment & Income 10

Demographics by Diagnostic Groups 11

Primary Sites of Tumor 11

Advanced Cancer 12

Advanced Oral, Pharyngeal Or Laryngeal Cancer 12

· Age and gender 13

· Marital status 13




Advanced Cancer (Other) 14

· Age and gender 14

· Marital status 14




Summary 15

Chapter 2 | Work and Income 19

Work And Income Statistics For Total Patient Cohort 20

· Working Age 22

· Occupational Groups 23

· Leave 24

· Accommodation - Financial Commitments 24

Non Working Age 25

Summary 26

Chapter 3 | Support 31

Support within the Patient’s Own Home 32

· In-Home Support 32

· Gender 32

· Age 33

Persons who Provide In-home Support 33

External Support 34

Support – Accompanying Persons To The Clinic 34

Patients Attending the Clinic Alone 35

Patients without Support in all 3 domains (In-Home, External, Clinic Attendance)

36

Patient Care Responsibility – Support Provided By Patient To Others

37

Summary 38

Table of Contents

Chapter 4 | Lifestyle Factors 41

Smoking Data/Rates 42

ETOH Data/Rates 42

Smoking Use and Alcohol Consumption 43

Leisure Activities 43

Summary 44

Chapter 5 | Relocation Issues 47

Socio-demographic of Regional Patients 48

· Accomodation Type 48

· Work and Income 48

Diagnostic Groups 49

Support 50

Patient Care Responsibilities - Support Provided by Patient to Others

51

Summary 52

References 56

Table of Contents

IntroductionThis report presents findings from research which documents the socio-demographic and psychosocial profile of newly referred head and neck cancer patients who were assessed at the time of diagnosis by the Princess Alexandra Hospital (PAH) Head and Neck Clinic, Brisbane, Queensland, Australia in 2008. Within Australia, head and neck cancer accounts for approximately 3% of all new cases of cancer diagnosed with approximately 2750 new diagnoses per year (Cancer Council Australia, 2010).

Depending upon staging and location, head and neck cancers currently have a five year survival of between 44 and 80% and higher incidence of disease recorded in males aged over 55 years (Hummami et. al., 2008). Treatment for head and neck cancer is often lengthy and can include a combination of chemotherapy, radiation therapy and surgery and can result in significant physical and psychosocial morbidity (Penner, 2009). Tobacco use and excess alcohol consumption are documented antagonists for head and neck cancer.

The report addresses a significant need for baseline local, Australian specific socio-demographic information for practitioners, academics and other stakeholders to assist and better plan services for those diagnosed with a head and neck cancer. The majority of socio-demographic and psycho-social research available on this cohort originates from the United States of America and Europe. Consequently, such research does not address regional specific issues including differences in cultural norms, distance and relocation for treatment, hospital and government support and primary care support.

‘Who are our patients?’ A Socio-Demographic Profile of Head and Neck Cancer Patients

The Head and Neck Clinic, Princess Alexandra HospitalThe Head and Neck Clinic at Princess Alexandra Hospital is a multidisciplinary clinic established in 1978 with the focus in diagnosing and treating patients with head and neck cancer. The Clinic incorporates multiple disciplines which reflects the complexity in the treatment and management of head and neck cancer, including surgery, medicine, oncology, radiation, dental/oral surgery, pathology, radiology, nursing, allied health and palliative care. The Clinic also provides services to assist with the often significant social and psycho-social issues associated with the disease and treatment. The Clinic sees approximately 300 new presentations each year.

IPP-SHR Practitioner Researcher SchemeThis project represents a collaboration between the Social Work Department, Princess Alexandra Hospital and the International Program of Psycho-Social Health Research, CQUniversity under the auspices of the IPP-SHR Practitioner Research (IPR) Scheme. The IPR scheme enables health professionals interested in research to undertake research on a topic of direct relevance to their professional practice with the support and mentorship of experienced researchers.

MethodologyData presented in this report was obtained through chart audit and retrospective analysis of psychosocial and demographic assessment interview practitioner notes of new patients presenting to the Head and Neck Clinic during 2008 at the time of diagnosis. All data was entered into SPSS using defined codes developed through initial thematic analysis of chart and practitioner notes and informed by current psycho-social health literature and health professionals working within the Head and Neck Clinic. A consensus


3

on codes used was obtained by all team members before data input. To ensure consistency data was coded by one researcher and was subject to routine audit. SPSS was used to provide descriptive statistics such as frequency and percentage to provide a basis for analysis of data.

301 discrete new cases were used to provide a socio-demographic analysis of head and neck cancer patients. This represented all known new patients who completed a psychosocial and demographic assessment prior to attending the Head and Neck Clinic for initial diagnosis within the 2008 calendar year. Some assessments were not able to be completed due to late referral, late arrival at the clinic or human resource issues. All data was de-identified before entry. Human Research Ethics Council approval was obtained from the Metro South Health Service District and CQUniversity Human Research Ethics Councils.

This report provides an overview of the socio-demographic profile of new head and neck cancer patients at the Princess Alexandra Hospital. Full details and information will be published in a variety of peer-reviewed journals.

ConstraintsData obtained in this report is retrospective and collected primarily at, or just prior to, the point of first presentation at the Head and Neck Clinic. Whilst best effort has been made to ensure data integrity and accuracy, some data may be inaccurate or incomplete. All data presented within this report has a variability factor of +/- 2%. Data that was not available on a particular subject was deemed ‘systems missing’ and was not included in analysis or presentation of descriptive statistics.

Data referring to diagnosis and tumour information may be incorrect due to subsequent change in diagnosis initially recorded on patient charts, inaccurate recording of diagnosis, legibility issues or access to information.

Comparisons between data obtained at the PAH Head and Neck Clinic and other data sources are made when available. However, direct and reliable comparison is often difficult due to differences in methodology, classification of diagnostic groups and parameters for inclusion. Any comparison made in this report will list interpretations and assumptions in respect to each comparison.

Introduction

Chapter 1 |

Socio Demographic ProfileThis chapter documents socio-demographic information obtained from new patients attending the Princess Alexandra Hospital Head and Neck Clinic in 2008. The discussion describes a number of sub-groups from the cohort, including those people with Advanced Oral, Pharyngeal or Laryngeal Cancer and Advanced Cancer (Other).

The specific demographics presented in this chapter are those related to age, gender, marital status, accommodation type, geographical location, people identifying as Aborigine or Torres Strait Islander (Indigenous) and income and employment.


Overall Demographics for Total Patient CohortInformation for the following section has been obtained from 301 new patients presenting to the Princess Alexandra Hospital Head and Neck Clinic from the first clinic in January 2008 to the last clinic in December 2008 at the time of diagnosis.

AgeA 10 year grouping for defining the age cohorts for the total participant population was chosen for describing relevant characteristics for this group.1

Age Categories Head and Neck Cancer PAH %

General Australian Population %*

44 years and under 9 (n= 27) 36

45 to 54 years 18 (n= 56) 14

55 to 64 years 23 (n= 68) 11

65 to 74 years 24 (n= 71) 7

75 to 84 years 21 (n= 63) 4

85 years and over 5 (n= 16) 2 Table 1 Age demographic of total patient cohort in comparison to General Australian Population Sheet

* Data obtained from Australian Demographic Statistics Series, Dec 2009 to May 2010. 67.1% of people with head and neck cancer were aged between 55 and 84 years with the average age being 63 years (S.D. 15). The age demographic was split evenly between those of working age (<65 years) who accounted for 50.2% of the total cohort and those aged 65 years and over accounting for 49.8% of the total cohort. The age demographic for the total cohort is consistent with the literature on head and neck cancer which lists peak incidence in the 60 - 69 year age group and with a trend towards younger people (Hoffman et al., 1998).


1 Of the total cohort of people attending the Head and Neck Clinic (n=301), some people (n=16) were not diagnosed with a head and neck cancer.

7

GenderOf the total population, 23.3% were female, 76.7% were male, representing a ratio of 3: 11. This is in comparison to the Australian population, of which the ratio between male to female is 1:1. (Australian Bureau of Statistics, 2006). The higher incidence of male diagnosis is consistent with the literature on head and neck cancer (Chaukar et al., 2009; Saunders et al., 2007; Tromp et al., 2004).

Marital status 56% of the total cohort was married or living with a partner and the majority of the remainder (40%) indicating that they were not living with a spouse or partner (systems missing 3.4%). People described their situation in various ways: 15.9% described themselves as previously married or living with a partner but now no longer living in that situation and having adult children; 11.6% described themselves as not married; 6.6% described themselves as separated or divorced; 5.6% described themselves as a widow or widower. 0.7% said they had a partner and at the time of the interview but were living in separate accommodation.

The percentage of those married or living with a partner resonated with trends of the general Australian population which show that as of 2006, 61% of the general population lived with a partner or spouse (Australian Social Trends, 2009).

Chapter 1 | Socio Demographic Profile

EducationDue to the fact that education information was not collected during the assessment interview, education level was not recorded, and consequently not included in this report.

Accommodation TypeAccommodation Type Head and Neck

Cancer PAH %General Australian Population %*

Own home or unit 63 68

House or unit in private rental market

20 24

House owned by family member

9 2

Government-owned rental house or unit

7 5

Systems missing 1 0

Table 2 Patient accommodation for total participant population

* (Australian Bureau of Statistics, 2006; Australian Social Trends 2008-2009). Notes on definitions: Own home or unit - Living in a home or unit which they own outright, or hold a mortgage. House or unit in private rental market - Renting a home or unit in the private rental market, and living in that accommodation either alone or sharing it with other co-renters. House owned by family member - Family own the home in which the patient lives, and the relevant family may or may not also live in the home. Government owned rental house or unit - State government owned house or unit which the patient rents. These figures reflect the normal accommodation patterns of the general Australian population, which indicate that 68% of the population live in their own home (48% owned outright, 52% with mortgage), 24% of people rent within the private market and 5% rent from State or Territory housing authorities (Australian Bureau of Statistics, 2006 ). These statistics contradict the literature and anecdotal commentary that claim people with head and neck cancer are disproportionately socio-economically challenged, and have a tenuous relationship with work and accommodation (Anderson et al., 2008; Davies & Welch, 2006; Patel et al., 2006; Vartanian et al., 2006). With the exception of age and gender distribution, socio-demographically, people who present to the Head and Neck Clinic at the time of diagnosis reflect the Australian norm.


9

Geographical location

Graph 1 Geographical location of people’s residences for total cohort. Notes on definition: Regional Areas: Defined by approximating the Queensland Department of Health, Patient Travel Subsidy Scheme as people whose residential address is more than 55 kilometres from the Princess Alexandra Hospital and who are considered for some limited financial assistance. Regional areas include New South Wales and other States. Metropolitan includes people living within the Greater Brisbane and Ipswich area which are all addresses within a 55 km radius of the Princess Alexandra Hospital.

45.5% of people came from Regional areas and 54.5% from the Greater Brisbane and Ipswich area (Metropolitan). In comparison, the population dispersion of Queensland shows that 55.5% of the population live outside the Greater Brisbane and Ipswich area and 45.5% live within that metropolitan area (Australian Bureau of Statistics, 2009).

The fact that nearly half the people may need to relocate in order to attend the Head and Neck Clinic and receive treatment is an important finding as it indicates the potential for a high level of psycho-social stress for the patient and their support person (McGrath, 1999, McGrath, 2001).

54.5%45.5%

Metropolitan

Regional


“...with the exception of age and gender socio-demographically, people who present to the Head and Neck Clinic at the time of diagnosis reflect the Australian norm.”

People identifying as Indigenous1.0% of the total cohort identified themselves as Indigenous2. This is in comparison to the overall Indigenous population of Queensland in which 2.4% of the general Queensland population identify themselves as Indigenous persons (comprising Aborigines and Torres Strait Islander people) (Australian Bureau of Statistics, 2006).

Employment & Income50.2% of people (n=151) were below 65 years of age and 49.8% (n=150) were 65 years and above. Only one person was below the legally defined working age of 15. In light of the near equal division of those who are over and those who are below working age, these groups will be dealt with separately to avoid conflation of income issues associated with employment and government pensions.


2 Indigenous identity is gathered from medical records and assessment data. It is at the patient’s discretion as to whether they identify themselves as Indigenous.

3 Self funding - includes all forms of incomes which are not government related or through employ-ment (assets and investments, spousal or family income, superannuation, insurance).

Working Age (n=151)53.6% of people at working age indicated that they were engaged in some form of paid employment at the time of diagnosis; 23.2% were receiving a government pension (71% of these were aged 55 to 64 years); 9.9% were self-funding3 (67% of these were aged 55 to 64 years); 6% were receiving Centrelink allowances; 6% had no income. More information on work and income is provided in Chapter 2.

Non-Working Age (n=150)6% of people aged 65 years and over indicated they were in some form of paid employment at the time of diagnosis (this includes 2% who were both working and receiving a Government pension); 73.3% were receiving a Government pension; 9.3% were receiving a Government pension as well as being self funding; 8.7% were self-funding; and 1.3% had no income (systems missing 1.3%).

11

Demographics by Diagnostic Groups

Graph 2 Breakdown of Diagnostic Categories according to advanced cancer diagnosis.

94.7% of people (n=285) were diagnosed with head and neck cancer. A minority (5.3%, n= 16) presented to the Head and Neck Clinic with symptoms which later were confirmed to be a non-cancerous head and neck condition. As can be seen in Graph 2, the two major sub-groups within the total cohort were found to be Advanced Oral, Pharyngeal or Laryngeal Cancer (n=145) and Advanced Cancer (Other) (n=75).

Head And Neck Clinic Assessed Primary Sites Of Tumour

Px

Hypopharynx 17

Larynx 37

Nasopharynx 13

Oropharynx 53

Occult Primary 20

Oral 65

Salivary 29

Sino-nasal 15

Skin and Face 41

Thyroid 4

Unquantifiable Nerve Sheaths 4

Miscellaneous 3

Total (n=) 301

Advanced Oral, Pharyngeal or Laryngeal Cancer

Advanced Cancer (Other)

Non Advanced Cancer

Non Cancer 48%

5%

22%

25%


Table 3 Primary Sites of Tumor

Advanced Cancer

For the purpose of this report, advanced cancer was defined to include people classified by Head and Neck Clinic team as having either a TIII or TIV disease (Sobin & Witterkind, 2002) and all patients treated with more than one treatment modality (Balm, 2007; Kelly, 2007; Smeele, 2007).

One of the major demographic issues that was posited by the research is that a significant portion of the people (73.1%, n=220) presented with an advanced cancer.

Whilst the research literature shows that generally a high proportion of people with head and neck cancer present with advanced disease (Hammerlid et al., 2001; Patel et al., 2006; Tromp et al., 2004; Vartanian et al., 2006), the percentage in this study is high. Advanced disease is mostly treated with combined treatment modalities, each with their own side-effects that can be intensified when used in combination (Llewellyn et al., 2005) and can result in significant morbidity from disease and treatment (Llewellyn et al., 2005). The literature indicates that there are many important psycho-social issues associated with this cohort, hence it is important to address the concerns associated with those diagnosed with advanced cancer (Buckwalter et al., 2007; deLeeuw et al. 2001; Penner 2009; Taylor et al., 2004).

The findings within this report, challenge the trend in the literature which posits that people with advanced head and neck cancer are demographically different to both the general population and to those with non-advanced head and neck cancer.

Advanced Oral, Pharyngeal or Laryngeal Cancer

For the purpose of this report, Advanced Oral, Pharyngeal or Laryngeal Cancer was defined to include the following primary disease sites: oral cavity; oropharynx; hypopharynx; all lips (all were SCCs); floor of mouth; tongue; alveolar ridges; buccal mucosa; hard and soft palate; retromolar trigone; mandible and maxilla; vallecula; tonsil; piriform fossa; postcricoid; postpharyngeal wall; nasopharynx; and larynx – supraglottic, glottic, subglottic, transglottic (Saunders et al., 2007; Davies & Welch, 2006; Hoffman


“One of the major demographic issues that was posited by the research is that a significant portion of the people (73.1%, n=220) presented with an advanced cancer.”

13

et al., 1998). There is much variation in the research literature as to what is included in oral and pharyngeal disease categories. The psycho-social literature on this sub-group of head and neck cancer is extensive, focusing predominantly on health-related quality of life (Murphy et al., 2007).

145 or 48.2% of all people had Advanced Oral, Pharyngeal or Laryngeal Cancer. There was no demographic difference between Advanced Oral, Pharyngeal or Laryngeal Cancer people and the general Australian population (with the exception of age and gender distribution).

Age and GenderThere were slightly more people of working age (54.5%) than compared to those without an advanced oral, pharyngeal or laryngeal diagnosis. The gender was similar to the total cohort, with 21.4% female and 78.6% male.

Marital statusThe marital status was similar to the total cohort. 55.9% of people indicated that they were married or living with a partner, a further 1.4% had a partner and at the time of interview were living in separate accommodation. 13.1% described themselves as previously married or living with a partner but now no longer living in that situation and having adult children. 11.7% described themselves as not married, 9.0% described themselves as separated or divorced, and 4.8% described themselves as a widow or widower.

Accommodation typeAgain, there was no difference between statistics associated with accommodation type data and the rest of the total cohort. 60% said they lived in their own home or unit, 22.1% lived in a house or unit in the private rental market, 9.7% lived in a family member’s home (with or without the family member living in the home), and 6.9% rented a government-owned house or unit).

Geographical location 46.9% gave a Regional residential address.

Indigenous People2 of the 4 Indigenous people in the cohort had Advanced Oral, Pharyngeal or Laryngeal Cancer.


Advanced Cancer (Other)

75 or 25% of the people interviewed had Advanced Cancer (Other) with a primary tumour location not being oral, pharyngeal or laryngeal.

Age and genderThe age of those with Advanced Cancer (Other) closely paralleled the rest of the total cohort. 7% were aged 44 years or under; 16% were aged 45 to 54 years; 19% were aged 55 to 64 years; 23% were aged 65 to 74 years; 25% were aged 75 to 84 years and; 11% were aged 85 years or older. Gender differences between those with advanced cancer as to those without (24% female, 76% male) were unremarkable.

Marital statusSimilarly, marital status reflected the overall cohort. 55% were married or living with a partner; 16.4% described themselves as previously married or living with a partner but now no longer living in that situation but having adult children; 12.2% described themselves as not married; 8.1 % described themselves as separated or divorced; and 4.3% described themselves as a widow or widower (systems missing- 4%).

Accommodation typeSimilarly, accommodation type reflects the figures for the overall group; 64% said they lived in their own home or unit; 17% said they lived in a house or unit in the private rental market; 12% said they lived in a family member’s home (with or without the family living in the home); and 5% said they rented a government-owned house or unit (systems missing – 1%).

Geographical locationAlthough slightly higher, the geographic location resonates with the figures for the overall cohort, with 47% having a Regional home address.

Indigenous People1 of the 4 Indigenous people were diagnosed with Advanced Cancer (Other).


15

Summary Socio-demographically, with the exception of the age and gender distribution, people who presented to the Head and Neck Clinic at the time of diagnosis reflect the Australian norm. Such comparisons were made across all sub-groups, including persons diagnosed with Advanced Oral, Pharyngeal or Laryngeal cancer, Advanced Cancer (Other), Non-advanced Cancer and Non-Cancer diagnosis. This challenges the research literature and anecdotal commentary regarding the perceived low socio-economic demographic of those presenting with head and neck cancer.

The data at the time of diagnosis on people’s living arrangements, work and income source and the percentage of people living with a spouse/partner is similar to the Australian general population. Due to the high morbidity associated with head and neck cancer disease and treatment, particular attention including psycho-social support, information provision and accurate prognosis time frames needs to be given to persons who are working at the time of diagnosis. This is particularly important considering that 53.6% of persons of working age have indicated that they are in some form of paid employment at time of presentation to the Head and Neck Clinic. This data contradicts the research literature that indicates that those of working age with a head and neck cancer diagnosis have a tenuous relationship with work.

Analysis of the age distribution of persons indicates that there is an even representation between those of working age and those of non-working age. More than half of those of working age at the time of diagnosis derive their primary income from employment, particularly for those aged 54 years or under. Analysis of the oldest working age cohort (aged 55 to 64 years) indicates more diverse income options, which is to be expected as such persons usually have mature careers and may be transitioning into retirement. A majority of persons aged 65 years and over received a Government pension (full or in part) as income, which is unremarkable when considering the Australian general population. Due to the constraints inherent in the retrospective methodology used for this research, income levels have not been recorded. However, as shown in Chapter 2, occupation types reflect the general trends of the Australian workforce.

Similarly, rates of home ownership, whilst slightly lower, reflected the Australian general population. Additionally, the range of accommodation options fit the Australian norm and ranged from outright home ownership to private market rental.


The age demographics for the total cohort are consistent with the literature on head and neck cancer, with peak incidence being in the 60 - 69 year age group. Similarly, the gender ratio of 3:11 (female : male) confirms that males have higher incidences of head and neck cancer.

The percentage of people living with a spouse or partner fits well with the Australian population, with no difference recorded between the diagnostic sub-groups.

Under half of the people attending the Head and Neck Clinic were not from the Metropolitan area. This statistic is similar to the population dispersion of Queensland, although it shows a greater tendency towards Metropolitan persons. Considering treatment length and related morbidity, people coming from a rural or regional location may require additional psycho-social assistance due to relocation issues. Additionally, due to the high incidence of rural and remote patients, effective communication and information may need to be arranged for local primary healthcare providers and post-discharge patients.

The socio-demographic profile of people presenting to the Head and Neck Clinic reflects the Australian norm with the exception of age and gender. However health professionals need to be cognisant of psycho-social issues associated with disease, treatment length, morbidity and complications and the possible impact on the patient and family. Services need to be tailored towards persons who may be vulnerable to psycho-social distress. Procedural collection and surveillance of socio -demographic factors at point of diagnosis will assist in the identification of vulnerable persons. Within this patient cohort, socio-demographic vulnerability may be associated with: regional and rural persons; persons aged under 54 years and in employment; and those in private rental or with a mortgage; and those without family support.


Dem

ogra

phic

Cat

egor

ies

Non

-Can

cer

Adv.

OPL

Can

cer

Adv.

Canc

er

(Oth

er)

Non

-Adv

. Can

cer

Tota

l Coh

ort

Gen

eral

Pop

ulat

ion

Age

%n=

16

%n=

145

%n=

75%

n=65

%n=

301

%n=

44 y

rs a

nd u

nder

50.0

86.

910

75

6.2

49

2762

#13

,552

,966

45 to

54

year

s6.

31

20.7

3016

1220

.013

1956

143,

011,

597

55 to

64

year

s12

.52

26.9

3919

1420

.013

2368

112,

475,

791

65 to

74

year

s12

.52

25.5

3723

1723

.115

2471

71,

554,

361

75 to

84

year

s18

.83

18.6

2725

1921

.514

2163

498

1,09

9

85 y

ears

and

ove

r0.

00

1.4

211

89.

26

516

237

9,44

2

Gen

der

Mal

e43

.87

78.6

114

7657

81.5

5376

.723

149

.9^

10,9

31,6

94

Fem

ale

56.3

921

.431

2418

18.5

1223

.370

50.1

11,0

23,5

62

Mar

ital S

tatu

s

Mar

ried

/ Par

tner

ed62

.510

55.9

8155

4156

.937

5616

961

*N

/A

Not

livi

ng w

ith

spou

se o

r par

tner

37.5

640

5841

3141

.527

4112

2N

/AN

/A

Syst

ems

mis

sing

0.0

04.

16

43

1.5

13

10N

/AN

/A

Acco

mm

odat

ion

Type

Ow

n ho

me

or u

nit

43.8

760

8764

4872

.347

6318

968

**N

/A

Hou

se o

r uni

t in

priv

ate

rent

al m

arke

t37

.56

22.1

3217

1315

.410

2061

24N

/A

Hou

se o

wne

d by

fam

ily m

emb

er18

.83

9.7

1412

93.

12

928

2N

/A

Gov

ernm

ent-

owne

d re

ntal

hou

se/u

nit

0.0

06.

910

54

9.2

67

205

N/A

Syst

ems

mis

sing

0.0

01.

32

11

0.0

01

30

N/A

Geo

grap

hica

l Loc

atio

n

Met

rop

olit

an75

.012

53.1

7753

4053

.835

54.5

164

45.5

^2,

004,

262

Regi

onal

Are

as25

.04

46.9

6847

3546

.230

45.5

137

55.5

2,44

7,84

1

Indi

geno

us

Indi

geno

us0.

00

12

01

00

14

2.4~

517,

043

Tabl

e 4

Ove

rall

Dem

ogra

phic

Cha

ract

eris

tics

of n

ewly

refe

rred

Hea

d an

d N

eck

Can

cer p

atie

nts

Den

otat

ions

: N

/A N

ot A

vaila

ble

* A

ustr

alia

n So

cial

Tre

nds

2009

#

2010

Pre

dict

ed P

opul

atio

n D

ata

- Aus

tral

ian

Bure

au o

f Sta

tisti

cs, 3

201.

0^

Po

pula

tion

by

Age

and

Sex

, Aus

tral

ian

Stat

es a

nd T

erri

tori

es, J

un 2

009

- Aus

tral

ian

Popu

lati

on~

N

= 2

006

Adj

uste

d Va

lues

Cen

sus

Dat

a, A

ustr

alia

n Po

pula

tion

**

Aus

tral

ian

Bure

au o

f Sta

tisti

cs 2

006


Chapter 2 |

Work and Income This chapter presents work and income data of persons presenting to the Head and Neck clinic at diagnosis. Data presented includes: work and income options, self-reported leave and the perceived impact of diagnosis on normal work function.


Work And Income Statistics For Total Patient Cohort (N=301)The overall cohort points to a substrata of financial positions from very challenged (no income or on Centrelink allowance) to well off (self funded and over 65 years of age). However it is important to note that out of this total cohort, 49.8% (n=150) of patients were aged 65 years and over and thus not of working age. Therefore, to realistically represent the interface between patients within these diagnostic groups and work, further analysis is split between those of working age and of non-working age later on in the discussion.

Patients with Advanced Oral, Pharyngeal or Laryngeal Cancer and those with Advanced Cancer (Other) did not show marked differences to the total patient cohort. Out of these two cohorts, 51% of patients who are of working age and diagnosed with Advanced Oral, Pharyngeal or Laryngeal Cancer indicated that they were in paid employment, with 45% of patients diagnosed with Advanced Cancer (Other), indicating that they were in paid employment.

Anecdotally, Advanced Oral, Pharyngeal or Laryngeal Cancer patients have been viewed to have a poor work ethic and a tenuous relationship to ongoing employment. However, the findings from this study suggest that the problem associated with employment is more to do with the impact and trajectory of the disease and treatment, rather than pre-existing socio-demographic factors. As shown in Table 6, this is confirmed by the total cohort employment rate which parallels the Australian workforce participation rate. The literature confuses this issue as most analysis focuses on the patient’s treatment and post-treatment socio-demographic profile and does not stratify those of working age against those who are not. To reiterate, this group at the point of diagnosis (with most having advanced cancer) is not deviant in relation to work ethic but reflects the normal Australian population.


“...problem associated with employment is more to do with the impact and trajectory of the disease and treatment, rather than pre-existing socio-demographic factors.”

Empl

oym

ent a

nd In

com

e

Pxs W

orki

ng A

gePx

s Non

-Wor

king

Age

Tota

l>

44

45 -

5455

- 64

65

- 74

75 -

8485

>

%n=

27

%n

=56

%n=

68%

n=71

%n=

63%

n=16

n=30

1

Empl

oyed

6718

6536

4027

75

21

00

87

Cent

relin

k al

low

ance

s11

37

43

20

00

00

09

No

Inco

me

72

74

43

11

21

00

11

Self

fund

ed7

25

315

1013

95

36

128

Gov

ernm

ent p

ensi

on7

214

837

2569

4976

4881

1314

5

Gov

ernm

ent p

ensi

on a

nd O

ther

0

00

01

110

713

813

218

Syst

ems M

issin

g

0

1

0

0

2

03

Tabl

e 5

Empl

oym

ent a

nd In

com

e ca

tego

rised

by

Wor

king

/Non

-Wor

king

Age

and

10

year

age

coh

orts

.

Not

es o

n de

fini

tion

s: E

mp

loye

d - P

aid

or s

elf e

mp

loym

ent o

r com

bina

tion

. Sel

f fun

ding

- in

clud

es a

ll fo

rms

of in

com

es w

hich

are

not

gov

ernm

ent

rela

ted

or th

roug

h em

plo

ymen

t (as

sets

and

inve

stm

ents

, sp

ousa

l or f

amily

inco

me,

sup

eran

nuat

ion,

insu

ranc

e). N

o in

com

e - P

atie

nt w

as n

ot

curr

entl

y re

ceiv

ing

any

inco

me

from

any

em

plo

ymen

t and

not

rece

ivin

g an

y G

over

nmen

t inc

ome

supp

ort p

aym

ents

. Gov

ernm

ent p

ensi

on a

nd

othe

r inc

ome

- Inc

lude

s so

me

form

of g

over

nmen

t pen

sion

and

wor

king

or s

elf-

fund

ed in

com

e. O

nly

one

per

son

was

bel

ow th

e le

gally

def

ined

w

orki

ng a

ge o

f 15.

Chapter 2 | Work and Income

Working Age There is potential for vulnerability in relation to this working age group as the treatment trajectory can result in these patients being unable to work for an extended time (Buckwalter et al., 2007; Penner 2009; Taylor et al., 2004; Vartanian et al., 2006). The impact on income and the capacity to meet prior financial commitments can potentially push those who are vulnerable into a cycle of poverty. Many patients are faced with the major financial challenge of having to adjust from a work income to a subsistence income.4

The findings from the total cohort were analysed in terms of ten year age cohorts (Table 5). Of interest is the 55 to 64 year cohort in which there is an increase in the number of people receiving a government pension. This reflects relaxed age criteria for Veterans Affairs Pensions. A breakdown of persons aged 55 to 64 years receiving a pension includes: Veterans Affairs 11.5%; Disability Pension 73.1%; Widow’s Pension 3.8%; Age Pension 11.6% (a high percentage of persons under the age of 65 and identifying as receiving an aged pension would be receiving a Veterans Affairs related pension) . This age group also contains the largest working-age cohort (66.7%) who identified as self funded. This is not unusual in an Australian context due to Australia’s superannuation and retirement legislation which applies to this age group. The data indicates that people aged 55 to 64 years have more income options available to them than those of the two younger working age cohorts.

In relation to the perceived vulnerability of working age patients, patients aged 54 years and under have potentially higher needs in comparison to patients aged 55 to 64 years, due to the direct relationship between income security and maintaining work. Patients within the 55 to 64 years cohort have additional options in relation to financial security with a high percentage receiving a government pension, self funding or transitioning to early retirement. However, patients within the 55 to 64 year cohort and receiving a government pension of some form may have additional burdens with 80.8% indicating they had morbidities unrelated to head and neck cancer.


4 As an income comparison with working-age income statistics, the Australian Bureau of Statistics data in May 2010 (Australian Demographic Series, ABS, 2010) shows the average adult full-time ordinary earnings at $1,256.30 per week where as the maximum Centrelink Newstart Incapacitated Allowance is $231.40 per week and the maximum Government pension payment is $350.55 per week.

23

Occupational Groups There were 47 different job occupations or related occupation groups.

The breadth and scope of these occupations reflect the Australian norm. An overview of the diversity of these occupations demonstrates the importance of speech, appearance/ presentation, physical ability and energy required for the performance of these various jobs. This raises particular concern in relation to the disease and treatment related morbidities. It is important to note that patients seeking to re-enter the workforce at some point in time post-treatment can face considerable disadvantages as a result of cancer and treatment issues (Buckwalter et al., 2007; Penner 2009).

• Airline ground staff • Architect• Assembly worker• Bricklayer• Boat crew• Carpenter/builder• Car wash operator• Chef/cook• Child care worker• Cleaner• Draftsman• Farmer• Fitter and turner• Engineer• Fitness instructor• Information technology consultant• Handyman• Hotel staff• Labourer• Landscaper• Manager• Lawyer• Mechanic• Miner

• Nurse• Pest technician• Property Consultant• Psychologist• Machinery operator/driver• Mariner• Minister of religion• Office worker• Plasterer• Plumber• Printer• Rehabilitation Officer• Salesperson• Customer service officer• Scaffolder• Shopkeeper• Teacher• Tour Guide• Surveyor• Waiter• Waterproofing operator• Welder/boilermaker• Window tinting operator• Writer


LeaveMany patients of working age gave information as to their understanding at the time of diagnosis about what leave5 they were entitled to receive to assist them through the treatment process. Of the 75 working-age patients in work who gave information about their leave status, 56% said they had no leave available, 24% said they had limited leave available, and 19% said they had ‘enough leave’. Some patients, even at the point of diagnosis, indicated that they had already begun to receive a Centrelink allowance due to having no leave available. Accommodation - Financial CommitmentsPatients indicated a wide range of financial commitments in regard to accommodation, such as home ownership or private rental. Of those of working age and employed (n=81) at the time of diagnosis, (n=50), 61.7% lived in their own home or unit, and 20% of these indicated they lived alone or provided the sole income for the household at the time of diagnosis. 27.2% (n=22) lived in a home or unit in the private rental market and 68.2% of these indicated they lived alone or provided the sole income for the household at the time of diagnosis.

Graph 3 Employment and Income as charted against age and frequency

Employed

Government pension

No Income

Self funded

Government pension plus work

Centrelink allowances

Government pension plus self funding

60

50

40

30

20

10

0

>44years

45 - 54 55 - 64 65 - 74 75 - 84 85>


5 Paid Leave: has been defined in terms of the current Australian employment conditions 2008. Employment contracts may or may not include paid leave and if the employment contract includes paid leave this can be of varying periods per year.

25

Non Working AgeAs shown in Table 6 (Income categories of newly referred Head and Neck Clinic patients) there is greater income stability for those aged 65 years and over. Most indicated they were receiving a government pension as income. This reflects income options for the Australian population at or near age 65 years or older where the majority of those aged 65 years and over receive a government pension or allowance followed by superannuation and investment income (Australian Institute of Health and Welfare, 2007). Nearly 20% were self funding in some form.

Whilst the level of income provided on a government pension is relatively small, the income security associated with receiving a pension was noted as a positive aspect with people having potentially adjusted their living standards and expectations prior to diagnosis. However additional out-of-pocket treatment expenses (regular transport costs, dietary requirements such as liquid supplements) may lead to some financial stress for such people.

By way of example, the maximum weekly Centrelink age pension payment6 for a single person is $350.55 per week. Regional people may experience additional expenses relating to undergoing treatment in a metropolitan hospital away from their normal home and support network.


6 Pension for a Single person without dependents who is living in their own home (irrespective of whether they own it outright) and their assessed assets (not including the home) are $178,000 or less (Centrelink May 2010).

SummaryPeople who presented at the Head and Neck Clinic, Princess Alexandra Hospital, indicated a wide range of income and work options. In view of the significant morbidities associated with head and neck cancer at the time of diagnosis, particularly for those with advanced cancer whose ability to speak, swallow, eat and breathe is affected and those who may experience significant pain or fatigue (Hammerlid et al., 2001), the percentage of people still in employment at the time of diagnosis is remarkable. An important finding as evidenced throughout this report shows that people diagnosed with head and neck cancer in most respects mirror the general Australian population. This contradicts the research literature (Anderson et al., 2008; Davies & Welch, 2006; Patel et al., 2006; Vartanian et al., 2006) and anecdotal comment which indicates that those of working age with a head and neck cancer diagnosis have limited financial resources, low income and have a tenuous relationship with work. In regard to the vulnerability of patients, it is helpful to explore the work and income status differences between those of working age and aged 65 years and over because in general, these groups reflected different issues.

For those at working age, the data indicates that issues related to income and income security are of high concern. There is particular concern for patients under 54 years of age working at the time of diagnosis and who have an advanced cancer. Many patients indicated that they did not have adequate leave at the time of diagnosis. Such concern is compounded by the fact that a patient’s capacity to return to work can be delayed by up to 18 months post treatment due to disease and treatment morbidities such as fatigue, pain, discomfort, eating and respiratory problems and physical functioning (Penner 2009; Taylor et al., 2004; Vartanian et al., 2006). Health professionals need to be aware of the issues associated with the financial and psychosocial impact of not being able to work for lengthy periods of time due to disease and treatment. In particular, the need to provide patients with information pertaining to prognosis, associated morbidities and a realistic time for recovery which will allow patients to plan better and access assistance. Health professionals should valso be aware of the differing types of government income assistance, in particular, the substantial difference between Centrelink allowances and government pensions.

For those at non-working age, issues associated with work and income exist around costs for providing out-of-pocket medical expenses, additional costs relating to treatment (such as dietary supplements) and relocation and travel costs. Income security was not a major concern, with a majority of patients of non-working age indicating they had a form of income at the time of diagnosis that provided financial stability. Whilst such income may be of subsistence level, it does provide a stable income throughout treatment and post treatment and therefore potentially removes income transition issues and associated stresses when adjusting to a cancer diagnosis.

Along with the myriad of well-documented health-related quality of life changes that patients with advanced cancer experience (Penner 2009), this data illustrates that a number of patients may face other major changes to their everyday life, such as loss of occupation, loss of income and potential change in accommodation. This data indicates that some patients who have a very serious illness have to cope with a multitude of changes simultaneously.


27

The importance of information provision

For patients of working age whose financial options are limited to government income support, and length of treatment and morbidity associated with advanced cancer, it is an ethical imperative to present adequate information for the correct determination of Centrelink entitlements.

Health professionals need to provide patients with adequate information about the likely financial and work impact due to the morbidity associated with the disease and treatment. This is particularly relevant considering the contrast between the relative financial security of different government support payments for people who are of working age and are unable to work.

Treatment teams need to be cognisant of the interplay between the various government income support categories, patient inability to return to work because of disease and treatment-related conditions and financial implications for the patient.7 The Australian government policy relating to income support payments for people of working age intends to motivate recipients to return to work as soon as possible. Due to ongoing disease and treatment-related morbidity, returning to work, if at all, can be a slow process for advanced cancer patients. Consequently, there can be a discord between the length of treatment and recovery and appropriate Government income support. Inappropriate determination may leave a patient and their family without appropriate income support for a period of time or being unnecessarily on a very low government income stream (such as starting on and continuing on Newstart payments when their period of disease and treatment-related work incapacity totals more than 24 months). Appropriate long term documentation is imperative for correct determination of government income assistance. Financial and income support options should be acknowledged as an important psychosocial stressor.


7 The financial differences between various government income support streams are large and have substantial implications both for the amount of income a patient may receive as well as their dispos-able assets. Patients diagnosed with a head and neck cancer and without other support mecha-nisms would predominately receive a Newstart Incapacitated allowance or government pension. The maximum government pension payment for a single incapacitated person without dependents who is living in their own home (irrespective of whether the home is owned outright) is $350.55 per week if their assessed disposable assets (not including the home) are $178,000 or less (Centrelink, May 2010). The maximum payment for a single person on Centrelink Newstart Incapacitated allowance in a similar living situation is $231.40 per week if they have no more than $5,500 in disposable assets (cash, shares, term deposits, trust funds) (Centrelink, May 2010). This is in comparison to the aver-age adult full-time ordinary earnings which is currently $1,256.30 per week. (Australian Demographic Series, ABS, 2010). Consequently, realistic prognostic information is imperative for person receiving Government income support. Persons assessed as being unable to work for a period of 2 years hence from the time of submission of the relevant documentation to Centrelink can be considered for eligibility for a pen-sion. If documentation is submitted in an ad hoc method and the documentation covers a relatively short period of likely incapacity, patients are likely to be considered for, or remain on Newstart Incapacitated payments. In addition to a lower weekly payment, Newstart payments have greater reporting onus.

Important practical implications can be derived from these findings: • The need for all patients to have adequate information that enables

them to optimise their income support during the likely treatment and recovery trajectory;

• Ensure that patients with income support issues have access to Centrelink personnel with expertise in this area to advise the best future options;

• Policy advocacy regarding appropriate government funded support mechanisms for patients who are likely to be out of the workforce for a considerable period of time because of their disease, treatment and recovery;

• The need for further research to be undertaken in relation to what income support issues these patients face during and following treatment, what strategies they use to cope in relation to financial issues and what impact, if any, this has on their psychosocial and demographic status.

In addition to income support issues, it is relevant to comment on the inadequacy of other government- funded assistance to meet the needs of head and neck cancer patients.

These include:• Lack of government-funded in-home help (practical assistance provided

to a person in their own home), other than specific post-discharge professional help, for working age patients;

• Long waiting lists for government-funded in-home help (other than specific post-discharge professional help) for all eligible patients;

• Inadequacy of patient travel assistance funding for Regional patients undergoing treatment in Brisbane or other major centre some distance from their home;

• Tacit reliance by government on the non-government sector to try to meet some of the outstanding relocation costs Regional patients may incur. This non-government assistance requires patients to make a formal application and give information to justify their personal need.

Careful attention needs to be focused around information provision to enable patients to optimise their income support during treatment and recovery.


Inco

me

Cate

gorie

sN

on-C

ance

r n=

16Ad

v. O

PL

Canc

er n

=145

Adv.

Can.

(O

ther

) n=

75N

on-A

dv. C

an.

n= 6

5To

tal C

ohor

t n=

301

Gen

eral

Pop

ulat

ion

Wor

k an

d In

com

e - W

orki

ng A

ge

%n=

11%

n=79

%n=

31%

n=30

%n=

151

%n=

14,

851,1

40*

Emp

loye

d81

.89

5140

4514

60.0

1853

.681

65.4

%

n= 9

,712

,645

~

Self

fund

ed18

.22

86

62

16.7

59.

915

N/A

N/A

Gov

ernm

ent p

ensi

on0.

00

2721

299

16.7

523

.235

N/A

N/A

Gov

ernm

ent p

ensi

on p

lus

wor

k0.

00

00

00

0.0

00

0N

/AN

/A

Gov

ernm

ent p

ensi

on p

lus

self

fund

ing

0.0

01

10

00.

00

0.7

1N

/AN

/A

Cent

relin

k al

low

ance

s0.

00

97

62

0.0

06

9N

/AN

/A

No

Inco

me

0.0

05

410

36.

72

69

N/A

N/A

Wor

k an

d In

com

e - N

on W

orki

ng A

ge%

n= 5

%n=

66%

n=44

%n=

35%

n=15

0

Emp

loye

d0.

00

53

21

5.7

24

6N

/AN

/A

Self

fund

ed40

.02

64

94

8.6

38.

713

N/A

N/A

Gov

ernm

ent p

ensi

on40

.02

7147

7533

80.0

2873

.311

0N

/AN

/A

Gov

ernm

ent p

ensi

on p

lus

wor

k20

.01

32

00

0.0

02

3N

/AN

/A

Gov

ernm

ent p

ensi

on p

lus

self

fund

ing

0.0

09

614

65.

72

9.3

14N

/AN

/A

Cent

relin

k al

low

ance

s0.

00

00

00

0.0

00

0N

/AN

/A

No

Inco

me

0.0

03

20

00.

00

1.3

2N

/AN

/A

Tabl

e 6

Den

otat

ions

: ~

Pa

rtic

ipat

ion

rate

(15

to 6

4 ye

ars)

- 20

06 A

djus

ted

Valu

es C

enus

s D

ata,

Aus

tral

ian

Popu

lati

on.

N

ote:

The

gen

eral

pop

ulat

ion

part

icip

atio

n ra

te in

clud

es a

ges

15 to

64

year

s, th

is is

in c

ompa

rison

w

ith

the

tota

l coh

ort o

f hea

d an

d ne

ck c

ance

r pat

ient

s w

here

the

aver

age

age

is 6

3 ye

ars.

N/A

Not

Ava

ilabl

e*

N=

200

6 A

djus

ted

Valu

es C

ensu

s D

ata,

Aus

tral

ian

Popu

lati

on


Chapter 3 |

SupportThis chapter looks primarily at the existing support8 a patient has at diagnosis from a spouse, partner or family member. These are the main sources of support evident for persons attending the Head and Neck Clinic and its importance is reinforced by the comparative lack of government funded help available for Queensland resident patients. The three avenues of support being considered are in-home support, support from others who do not live with the patient, and support provided by persons other than health professionals at the Head and Neck Clinic. The exception is those few patients who are living in a residential care facility who may not have family support, but the nature of their living arrangement is sufficient to be considered as support. The results of this study indicate levels of in-home support consistent with the levels of support generally in the Australian community. Support at the time of diagnosis was recorded as it represents an important potential indicator of resilience to the physical and emotional challenges associated with the disease and associated treatment. Benefits of patient support includes practical assistance and emotional care, and can translate into a reduction in the recurrence of disease, lower depression rates and an increase patient survival rates (Chandu et al., 2006; Anderson et al., 2008; Wong et al. 2006; Konski et al., 2006). However, the literature suggests that patients presenting with advanced disease tend to have reduced support (Rozniatowski et al., 2005; Tromp et al., 2004), particularly older patients (Tromp et al., 2004). In contradiction to this, the results of this study indicate levels of in-home support consistent with the levels of support generally in the Australian community.


8 The literature defines the notion of support based upon spousal or live-in partner support. The findings from this research indicate that this is a limited perspective and thus too restrictive. Conse-quently, the definition of support for this research is expanded to include:(a) having an adult family member (includes spouse/partner) living with the patient;(b) an adult family member accompanying the patient to the Head and Neck Clinic (patient can be living alone, but accompanied by a family member at the Clinic);(c) an adult family member who does not live with the patient and who is already providing some assistance to the patient (patient can be living alone and already receiving this assistance such as domestic duties or shopping or transport aid);(d) living in a residential care facility.

Adult family member: An independent adult who is part of the immediate or extended family.

Support within the Patient’s Own HomeIn-Home Support 9 Of the 301 patients, 67.4% (n=203) lived with a partner10, family, or in a residential care facility and indicated that they had some form of in-home support. This is consistent with figures shown by Australian Bureau of Statistics (2006) for family households in 2006, which is also 67.4%11. At a broad level, these percentages indicate a reasonable level of support for patients in this study.

Of those 203 patients with in-home support, over half (58.1%) had in-home support available both day and night, and slightly less than half (41.4%) only had support during non-working hours (systems missing 1.0%). Overall, the level of in-home support decreased with patient age, 53.2% were of working age, compared with only 46.3% aged 65 years and older. Within the older cohorts, the percentage of in-home support continues to decrease with increasing patient age. Male patients were more able to access in-home support with 81.8% being male (71.9% of all males) compared to female patients at 18.2% (52.9% of all females). The subgroup with the least in-home support was female patients aged 65 years and older.

For patients with advanced cancer, the pattern is similar to that for the total group. 66.9% of patients diagnosed with Advanced Oral, Pharyngeal or Laryngeal Cancer lived with a partner, a partner and other adults, with family, or living in a residential care facility, with 61% of this support being available 24 hours. A slightly lower percentage (65.3%) of patients with Advanced Cancer (Other) had in-home support.

For patients with Non-Advanced Cancer, 69.2% had in-home support. 75% of patients who were diagnosed not to have cancer had in-home support.

GenderThe pattern of support differs in terms of gender, with females having the lowest percentage of in-home support (52.9% of females), compared to males (71.9%), with older females having the least in-home support. Most in-home support was provided a by partner. Females attending the Head and Neck Clinic appear to have the least support with a higher proportion of females living alone and relying on part-time external support.


9 In-home support: Help provided within the patient’s home. 10 Partner: Spouse or partner.11 The ABS definition only includes nuclear family– partners/spouses/children.

33

AgeIn terms of age, there was an overall pattern of decreasing in-home support with increasing age. Many of the older patients were relying on their partner or spouse at the time of diagnosis. Although the age of the partner was not known, a reasonable assumption would be they would be of similar age to the patient. This is important as spousal stress can be a significant factor in the ability of patients and their carers to cope with the disease and treatment. (Kim & Given, 2008; Gaugler et al., 2008). All patients aged 85 years and over had no identified in-home support.

The data points to female gender and increasing age and advanced cancer as points of vulnerability for this subgroup. Additionally, although there is little difference between the total cohort and patients with advanced cancer the data highlights the vulnerability of patients with advanced disease, with one-third of patients not having in-home support.

Persons who Provide In-home SupportMuch of the in-home support was provided by the patient’s partner. Of the patients with in-home help, 70% (n=142) of such support was exclusively provided by the patient’s partner. 41.5% of these partners were working and only able to provide non-working hours assistance. 17.6% (n=25) had in-home support provided by only a partner with young children in the household.

Although this support appears adequate, on deeper analysis there are many complicating factors. Ability to provide adequate support can be reduced by factors such as partners who have major responsibility such as caring for children, partners who are working and provide the main source of household income, and elderly partners. The reliance on the partner for the majority of support needs is of particular concern for the elderly, with 30 patients aged 75 years and older and dependent on their partners for in-home help who are likely to be challenged in their care-giving capacity.

Apart from the partners there was a variety of other family members who provided in-home help including parents, siblings, adult children, grandchildren, step children, and family relatives. There were 60 different combinations of support persons within the patient’s home, excluding non-family.

Chapter 3 | Support

External Support12 Data pertaining to external help indicated this was limited by availability of the support persons. Of the 82 patients who indicated that they received external support, 50% was provided exclusively by family, with a further 11% provided by family and a government-funded agency. Only 46% of all external help provided by family was available on a 24 hour basis, due to family member’s work commitments. For 20.7% of people receiving external help, this was provided solely by a government-funded agency. 18.3% of patients received external help only from a non-related person.

The major source of external support was from immediate13 or extended14 family. Most external family help was provided by adult children.

Support – Accompanying Persons To The Clinic Patients attending the Head and Neck Clinic are encouraged to bring support person(s) with them. Support offered by accompanying persons is considered significant as it includes: emotional care; attendance at the clinic; travel to and from the clinic; participation in the clinical consultations; and information processing.

76.4% of patients attended the Clinic with one or more support people with them. 23.6% attended the Clinic alone.

There was a noticeable pattern for some of the older patients who either lived alone or lived with non-related people to have someone accompanying them to the Head and Neck Clinic. Of those patients who lived alone or lived with non-related people, 53 (55.8%) had support person(s) with them at the Clinic. 71.7% were aged 65 years or over with the support person/s being mostly family (84%).


12 External Support: Practical help provided by persons who do not live with the patient. External support includes Government and Non- Government agencies including Community Health, Blue Care, Spiritus and Centacare). Temporary post-hospital-discharge funded assistance which is gen-erally of a nursing assistance nature is not included in this definition.

13 Immediate family: Patient’s parents, spouse or partner, children, grandchildren.

14 Extended family: Patient’s siblings, aunts, uncles, nephews, nieces, cousins.

35

Table 7 Support by accompanying person in 10 year age cohorts. Note: Persons attending with partners and other family members are included in the classification of “Attended with Partner”

There was no difference in support options for patients with Advanced Oral, Pharyngeal or Laryngeal Cancer or Advanced Cancer (Other). Due to methodological constraints, there is no information available on the capacity of this support to continue for the patient beyond the initial Clinic day.

Patients Attending the Clinic Alone (N=71)24% of the total cohort attended the clinic alone, and of these most (85.9%) were male.

Of the cohort of patients attending the clinic alone, 56.3% (n=40) were Regional patients (29.2% of all Regional patients). This represents an important potential vulnerability due to challenges posed by relocation issues. 29.6% (n= 21) of those attending alone lived with family. This is another example of the findings from this study which affirms the complexity of what appears to be a straight forward notion of support. Indeed 11.3% (n=8) of those attending alone lived with a partner who had care responsibilities for another person.

Age Categories Attended Alone Attended with Partner

Attended with Family Member

Attended with another Person

44 yrs and under 11.3% 8 9.0% 12 4.1% 3 18.2% 4

45 to 54 years 22.5% 16 17.9% 24 14.9% 11 18.2% 4

55 to 64 years 32.4% 23 22.4% 30 13.5% 10 22.7% 5

65 to 74 years 23.9% 17 27.6% 37 16.2% 12 22.7% 5

75 to 84 years 7.0% 5 21.6% 29 35.1% 26 4.5% 1

85 years and over 2.8% 2 1.5% 2 16.2% 12 0.0% 0

Total Cohort n= 301 23.6% n=71 44.5% n = 134 24.6% n=74 7.3% S.M 3n=22

Chapter 3 | Support

Patients without Support in all 3 domains (In-Home, External, Clinic Attendance)There were 16.9% (n=51) patients who were potentially vulnerable because of lack of family support. These patients indicated that they did not have any family support, no evidence of support in any of the 3 areas presented above – no support person at the Head and Neck Clinic, no in-home support, and no external support.

Some of the details of these 51 unsupported patients are:• 42 (82%) had advanced cancer (19.1% of all advanced cancer patients).• 29 (56.9%) had Advanced Oral, Pharyngeal or Laryngeal Cancer (20% of

all Advanced Oral, Pharyngeal or Laryngeal Cancer patients).• 41 (80%) were male (17.7% of all male patients)• 21 (41%) were aged 65 years or over (14% of all patients aged 65 years

or over) • 24 (48%) were Regional patients (17.5% of all Regional patients)

These findings provide significant insights in relation to the potential high needs of these patients for support. Of particular concern is this cohort’s high incidence of Advanced Cancer and Advanced Oral, Pharyngeal or Laryngeal Cancer in respect to their perceived support network. Appropriate assessment of patients’ support networks is important for the identification and follow-up of these patients as an important supportive care service delivery issue.


“Of particular concern is this cohort’s high incidence of advanced cancer and advanced oral, pharyngeal or laryngeal cancer in respect to their perceived support network. ”

37

Patient Care Responsibility – Support Provided By Patient To OthersThis section reverses the focus and explores the patient’s support commitments to others.

22.6% out of the total cohort had care responsibilities for others. Of these, 54% had responsibilities for dependent children , and 10.3% were sole parents.15 25% had carer responsibilities for their spouse or partner. Of patients with care responsibilities, over 70% had Advanced Cancer, 54.4% had Advanced Oral, Pharyngeal or Laryngeal Cancer, and 17.3% had Advanced Cancer (Other).

Patients care responsibilities were diverse and included dependent children, adult disabled children, spouse/partner with disabling medical conditions, frail and/or disabled parents or adult siblings and disabled friends.

Chapter 3 | Support

15 Dependent children: Children for whom the patient has care responsibilities and these children are still at school or under school age.

Summary Appropriate assessment of patient’s support networks is an important supportive care service delivery issue. At a broad level this study indicates there is a reasonable level of support for most patients. However, it has been shown that higher levels of support have positive ramifications on a patient’s ability to cope with the physical and psychological morbidity associated with the disease and treatment. Additionally, a decrease in incidence of depression, better survival outcomes and quality of life have been attributed to the level of social support (deLeeuw et al.,2001; Chandu et al. , 2006; Ziegler et al.,2004; Whale, 1998).

The data from this study shows there is some informal support available for patients who are living without in-home family support at diagnosis. Psycho-social assessment at the time of diagnosis needs to focus on ascertaining support levels of patients – both current levels of support and the capacity of the partner or family to provide appropriate levels of support during treatment and post-discharge. This assessment of available and potentially relevant support is particularly important given the paucity of government funded in home support, the current lack of government funded support available for working age patients and long waiting times to access services. There is also concern that government assistance tailored towards care of the elderly, may not be appropriate or available for those of working age and without family support.

Additionally, the data shows that most support is provided by partners and immediate family. This is an important finding for health professionals as patients with head and neck cancer have high treatment debility and the post-treatment period is a stressful time for patients and their carers. Consequently, early identification and assessment of potential post-treatment support networks is necessary to adequately prepare care givers and to assist with discharge planning.

Information needs to be provided to the patient and their support person, not only about treatment timelines and side effects, but also the likely impact of disease and treatment on patient’s lifestyle as well as relevant and appropriate community resources. Printed and other forms of literature for the patient and their support person that includes information covering support, financial, emotional and practical sources of help may assist in self assessment of need and support.


39

Communication Issues

Verbal communication ability represents an important area for head and neck cancer patients, both in terms of consultation with health professionals and in wider social settings. Whilst methodological constraints restricted the specific exploration of communication, it was anecdotally recorded that a number of patients expressed verbal communication difficulty at diagnosis. The ability to communicate, represent oneself and advocate is an important support function. The main forms of communication difficulty expressed at diagnosis included:

• Discomfort in speaking;• Intelligibility of speech;• Capacity to speak with reasonable comfort for the required length of time.

It is likely that such verbal communication difficulty will be exacerbated through the disease and treatment trajectory, with potential post treatment physical morbidity impacting on verbal communication ability. Further research needs to be undertaken on the impact of communication ability in important areas such as decision making, consultation, treatment, and support during treatment and in the post treatment period. This is particularly important considering the complex nature of the disease and treatment and the associated decision making. Facility in communication is needed beyond the simple answering of patients to concrete health-related questions or the use of slow and laborious handwritten communication. This also extends beyond simple decision making, as illustrated by the fact that normal counselling (for emotional and psychosocial issues) and complex psychosocial assessment, normally requires ongoing patient communication with reasonable comfort and intelligibility over a lengthy period (30 minutes or longer) and on more than one occasion. Communication devices and technology aides need to be explored for use within consultation, assessment, discharge planning and provision of psychosocial support.

Chapter 3 | Support

Chapter 4 |

Lifestyle FactorsThis chapter presents data pertaining to the lifestyle factors at point of diagnosis that may have relevance to coping, treatment and post- treatment psycho-social issues and diagnosis. As such, the smoking and alcohol consumption and leisure activities of the patients attending the Head and Neck Clinic will be discussed. The findings from this study confirm the commonly acknowledged fact that alcohol consumption and tobacco use are risk factors for oral, pharyngeal and laryngeal cancers. This chapter aims to inform the reader that whilst alcohol and tobacco usage patterns confirm current Head and Neck cancer literature, the findings do not support the common misconception that head and neck cancer patients have low socio-economic status, tenuous relationships with employment and disruptive social and living situations at the time of diagnostics. Excessive alcohol consumption and to a lesser extent tobacco usage can attract stigmatising labels to the user. Excessive alcohol consumption can be associated with disruptive living situations and poor employment history. However the data in this report shows that patients attending the head and neck clinic do not necessarily fit such socio-demographic profile, and instead reflect the Australian norm with the exception of age and gender distribution.

It is to be noted that the interpretation of this data is subject to the constraints imposed by the retrospective analysis methodology used. Patient alcohol and tobacco consumption has been obtained through chart audit and from health practitioner notes. Detailed analysis of usage and history cannot be undertaken as this information was not specifically sought or documented.


Smoking Data/ RatesSmoking rate was recorded for 238 new patients attending the Head and Neck Clinic (systems missing 21%). Data presented within this chapter is calculated from the total with recorded history. As can be seen in Table 8, of those 238 patients, 180 patients were current smokers or had previously smoked16 (75.6%), 24% (n=58) indicated they had never smoked17, 36% (n=86) indicated they were current smokers18. One person said that they consumed betel nut.

Whilst the history of tobacco use appears to be high, the historical average of smoking rates must be mentioned. This ranges from 72% of the total male population smoking in 1945, 45% in 1976 and to the current smoking rate which is 21% (Winstanley & White, 2008). Considering the age distribution of head and neck cancer patients which has uneven representation in older ages, the smoking rates may not appear as dramatic when compared to the above national figures. Additionally, comparison is difficult as the methodology used did not allow for data to be gathered for smoking frequency, quantity, length or time since cessation.

Given that smoking is a known contributor to the development of head and neck cancer, the higher rate of current smokers (36%), compared to the average Australian population (21%) is unsurprising. Similarly, there is higher incidence (43%) of current smokers amongst patients diagnosed with an Advanced Oral, Pharyngeal or Laryngeal Cancer compared with those diagnosed with Advanced Cancer (Other) (24%). Those diagnosed with Advanced Cancer (Other) had the lowest rate of current smokers (24%) and the highest rate of persons who have never smoked (37%). Over all diagnostic groups, there was a higher incidence of males who had a smoking rate (Current smokers or previously smoked).

ETOH Data/ Rates The record of any history of alcohol consumption was obtained for 185 patients (systems missing 38.5%). Due to the methodological constraints, information is not available on frequency, quantity, length or time since cessation.

Out of patients indicating their history of alcohol consumption, 44.5% indicated that they were currently18 or had a history of consuming alcohol. There were no marked differences between recorded alcohol rate and diagnostic or other socio-demographic categories.


16 Recorded as current smokers or previously smoked.

17 Never: Person indicates they have never engaged in either tobacco or alcohol consumption.

18 Current: Person indicates that they currently engage in either tobacco or alcohol consumption. Rate of usage which implies current is not recorded and is based upon the patient’s interpretation.

43

Smoking Use and Alcohol ConsumptionDue to the limitations associated with the methodology, alcohol and tobacco consumption could not reliably be combined.

Leisure ActivitiesLifestyle and leisure activities that were recorded at the point of diagnosis indicate that people attending the Head and Neck Clinic accessed a wide range of leisure activities that included physical and non-physical elements or a combination of both. It is understood that the disease and related treatment will impact on the ability of some to engage in their chosen leisure activities. Consequently, such persons will have a reduction in the positive emotional and psycho-social factors associated with leisure, such as comfort, distraction and stress reduction.

Leisure activities engaged by people attending the Head and Neck Clinic:• reflects the range of normal activities engaged in Australian culture• are likely to be negatively impacted on by fatigue limitation imposed by disease and treatment• are likely to be impacted on by financial implications associated with possible reduction of work and income• are likely to be negatively impacted on by communication limitation imposed by disease and treatment• are more likely to be negatively impacted on if the activities are predominately physical.

This has important implications in relation to coping and psychological adjustment. In addition, this is another factor that exacerbates the stress caused by the myriad of changes and challenges associated with the disease and treatment.

Over one-third of male patients with Advanced Oral, Pharyngeal or Laryngeal Cancer nominated primarily physical leisure activities whereas most female patients had activities that spread over primarily non-physical and combination activities, with primarily physical activities nominated as their least favoured.

Of particular concern is the number of male patients of working age with Advanced Cancer who nominated predominantly physical leisure activities and who had jobs of a physical nature. How patients spend their non-work or leisure time becomes a significant issue as the post-treatment phase is a potentially vulnerable time (Semple et al., 2008).

Chapter 4 | Lifestyle Factors

SummaryMethodological constraints restrict the ability of this report to accurately compare the smoking and alcohol history of new patients at the Head and Neck Clinic, Princess Alexandra Hospital with that of the general population. It is postulated though, that given the known causes of Head and Neck cancer and in particular, Advanced Oral, Pharyngeal and Laryngeal Cancer, that the rates presented are unsurprising.

However, despite an increased incidence of smoking, persons presenting at the Head and Neck Clinic reflect the Australian norm outside of disease-specific demographics. Treatment teams need to be aware that patients may inadvertently be subjected to stigma associated with smoking and excessive alcohol consumption. Such effects can have implications on how the person is perceived by health professionals, family, acquaintances and the wider community. More research on this subject needs to be undertaken, particularly on whether stigma affects treatment decisions, accessing family and community support, accessing other psychosocial support therapies (such as group therapy) and on methods of lessening such stigma and its consequences. Research into stigma in other disciplines shows that education, awareness and communication and understanding can reduce the negative effects associated with stigma.

The disruption caused by the disease and treatment process in participating in leisure activities may need to be explored by health professionals with patients prior to and after treatment. Some of the most commonly mentioned difficulties experienced by people treated for Head and Neck cancer such as fatigue, dysphasia, eating problems, communication problems, alteration in physical ability and appearance and depression (Chandu et al., 2006; Rogers et al., 2008; , Taylor et al., 2004; Nguyen et al., 2005; Penner 2009) are likely to impact on the patient’s ability to continue in some of the leisure activities mentioned. Such disruption may deny the patient of a potentially stress- reducing set of activities and consequently impact on the patient’s ability to cope emotionally and psycho-socially with the disease and treatment. An exploration of the need for alternative activities is an important supportive care response for such patients.


“There were no marked differences between recorded alcohol history and diagnostic or other socio-demographic categories. ”

Smok

ing

Rate

sN

on-C

ance

r n =

16Ad

v. PO

L Ca

ncer

n=

145

Adv.

Canc

er (O

ther

) n=

75N

on-A

dv. C

ance

r n =

65To

tal C

ohor

t n=

301

F =

9 M

= 7 To

tal*

F = 31

M =

11

4 To

tal

F= 18

M =

57

Tota

l F

= 12M

=

53To

tal

F = 70

M =

23

1To

tal

%n=

%n=

%n=

%n=

%n=

%n=

%n=

%n=

%n=

%n=

%n=

%n=

%n=

%n=

%n=

Curr

ent*

*50

429

240

632

746

4243

499

128

1224

1333

333

1533

1830

1538

7136

86

Prev

ious

Usa

ge**

252

433

335

276

4239

3945

364

4017

3921

444

4119

4223

3216

4178

3994

Nev

er**

252

292

274

419

1211

1820

556

3314

3720

222

2612

2514

3819

2139

2458

Tota

l with

Rec

orde

d H

isto

ry

8

7

15

22

92

114

11

43

54

9

46

55

50

18

8

238

Syst

ems M

issin

g

1

0

1

9

22

31

7

14

21

3

7

10

20

43

63

Tota

l

9

7

16

31

114

14

5

18

57

75

12

53

65

70

231

30

1

Tabl

e 8

Smok

ing

His

tory

wit

hin

diag

nost

ic g

roup

sPl

ease

not

e: P

erce

ntag

es a

re c

alcu

late

d on

sub

grou

p co

rres

pon

ding

to ri

ght a

djac

ent c

olum

n

Den

otat

ions

: F

Fem

ale

M

Mal

e*

Tota

l of D

iagn

osti

c su

bgro

up *

* Pe

rcen

tage

s ar

e ca

lcul

ated

from

thos

e w

ith

a re

cord

ed s

mok

ing

hist

ory,

not

from

the

tota

l coh

ort

Chapter 5 |

Relocation IssuesThis chapter focuses on the socio-demographics of the 137 people attending the Head and Neck Clinic, Princess Alexandra Hospital who indicated that they come from a regional or remote area.

Information included in this section is from those patients who live 55 kilometres from the Princess Alexandra Hospital. These patients have already travelled more than 55 kilometres to attend the Princess Alexandra Hospital Head and Neck Clinic, and many will receive at least part of their subsequent medical treatment at a hospital which is 55 kilometres or more from their residential address.

The 55 kilometre radius has been chosen as it approximates parameters of the Queensland Patient Travel Subsidy Scheme (PTSS) which provides limited financial, travel and accommodation assistance to patients (and in some instances also to a support person) to attend the nearest appropriate treating hospital to their residential address. Within the 55 kilometres radius is the greater Brisbane metropolitan and Ipswich area (Metropolitan). It should be noted that people identifying as relocated19 for treatment (Regional) may have a secondary referral from a Queensland and interstate regional hospitals including but not limited to, Cairns, Townsville, Bundaberg, Toowoomba, Mackay, Lismore and Grafton.

This chapter is important as it now well documented in the literature (McGrath, 1999; McGrath, 2001) that people relocating for specialist treatment face unique and numerous challenges, including coping with an unfamiliar living and social environment during treatment, separation from immediate family and extended support systems and increased financial costs.

47 people of the 83 people, who provided information on this issue, indicated they could not commute daily and had to stay for specialist treatment. Distance travelled is an important factor that contributes to the complex set of interrelated issues which can contribute to health disadvantage for people living in a rural and remote area. (AIHW, 2008)


19 Relocation: The notion of relocation incorporates all patients travelling over 55 k, whether they commute and stay overnight or whether they commute between their residence and treating centre on a daily basis.

Socio-demographic of Regional Patients (N=137)The Regional working age profile (54.7%) was higher than the Metropolitan group (46.3%), and the Regional retired age profile lower than the Metropolitan group. Gender percentages were similar to the Metropolitan cohort with a decrease in relation to the number of females (18.2%). 58.4% of Regional patients were married or living with a partner. This is a similar figure to that of the total cohort (4.1% higher for Regional patients) and to that of the general Australian population (61%). However, this indicates 40% of Regional patients live without any identified spouse/partner support. Whilst, this figure is similar to the Metropolitan patients, it is significant due to additional burden of relocation and the extra challenges that relocated patients face. One patient identified as a Torres Strait Islander.

Accommodation typeHome ownership was slightly higher amongst Regional people, with 68.6% indicating they live in their own home or unit. This compares to 63% living in their own home or unit for the total cohort, and 68% for the Australian population. 17.5% lived in a house or unit in the private rental market, 5.8% lived in a government-owned rental house or unit, and 8.0% lived in family member’s home or unit.

Work and IncomeComparison between Regional patients and Metropolitan patients in regard to work and income showed more Metropolitan people of working age were in work at diagnosis (Metropolitan 63.2% compared to 50.7% Regional) but otherwise the figures were unremarkable.

Resonating with the literature (McGrath, 2001) the present data indicates a potential for significant hardship associated with work and income for Regional people. N=32 (71%) working age Regional people who gave information on their leave status indicated that they had no leave available.

It is interesting to note that there is a higher incidence of Regional working age patients (65%) diagnosed with an Advanced Oral, Pharyngeal or Laryngeal cancer compared to the Metropolitan working age patients (45%).


49

Diagnostic GroupsOf the 137 new patients attending the Princess Alexandra Hospital Head and Neck Clinic who had a residential address which was 55 kilometres or more from Princess Alexandra Hospital, 81.8% of these Regional patients went on to have at least one treatment completed in Brisbane. 89% of all Regional patients with advanced cancer had at least one of their treatments in Brisbane20. This indicates that a majority of Regional patients who attend the Head and Neck Clinic, Princess Alexandra Hospital are not only diagnosed in Brisbane but also receive at least some of their treatment in Brisbane.

Although percentages in terms of all Advanced Cancer patients are similar for Regional patients (75.2% of all Regional patients) compared with Metropolitan patients (71.3% of all Metropolitan patients), it is significant to once again note the additional burden associated with relocating and the morbidity associated with an Advanced Cancer and treatment.

Likewise there was no difference in the breakdown of patients diagnosed with an Advanced Oral, Pharyngeal or Laryngeal Cancer (49.6% of all Regional patients compared to 47% of all Metropolitan patients), Advanced Cancer (Other) (25.5% of all Regional patients, compared to 24.4%), and Non-Advanced Cancer (21.9% of all Regional patients compared to 21.3%).

Patient voice function at the time of diagnosis was clear for only 69.3% of Regional patients21. The disease and treatment can impact strongly on a number of core functions that would make relocation for treatment difficult, such as undertaking a telephone conversation, communication with treatment team, wider community and home support networks. Of such patients who had impaired communication function, 60% was for articulation support, 15% for patient hearing problems, 20% for patient cognitive problems22, and 5% for miscellaneous problems. These issues are important for rehabilitation and discharge planning for this group of patients who will be returning home to a situation which may not have adequate medical and allied health support.

There is a further confounding issue associated with co-morbidity amongst Regional patients. It is interesting to note that issues of co-morbidity were raised more often by Regional patients or their support person without prompting because of the negative impact on their ability to cope with the unfamiliar metropolitan hospital environment. Much co-morbidity was physical problems related to arthritis, and hearing or cognition, and some to the severity that people were receiving a Disability Pension.

Chapter 5 | Relocation Issues

20 Treatment not restricted to the Princess Alexandra Hospital. Treatment options available at Mater Hospital, Greenslopes Hospital and other private hospitals within Brisbane.

21 The extent of this impairment was indicated by the patients not being able to sustain a psychosocial assessment interview.

22 Cognitive problems were self reported by patients or their support persons.

SupportIn relation to the support available at a patients’ home residence (not necessarily at the temporary residence used for relocation for treatment) 72.3% of Regional people lived with a spouse/partner, family or in a residential care facility. Of those with in-home support 65.7% had in-home support available 24 hours, and 33.3% had support during non-working hours. Thus, 27% of patients will return to a situation of living alone without in-home identified support.

In comparing in-home support for Regional people as opposed to Metropolitan people, the level of in-home support was slightly higher for Regional people. Those Metropolitan patients do not have to potentially face the additional issues Regional patients face when they have to relocate for treatment, and thus unsupported Regional patients are likely to be more vulnerable during the time they are relocated for treatment.

Of the Regional people, 27.7% indicated that they were able to access external support (support from sources outside their own home). External support was provided by a variety of informal and formal mediums including: 55.3% family; 21.1% non-family (friends, neighbours), 15.8% government-funded agency staff; 7.9% a combination of family and government-funded agency staff. The important practical implication of this finding is that 72.3% have no identified external support once returning to their residence.

In consideration that these Regional people had to travel distances to the Head and Neck Clinic it is of significance that 70.8% were accompanied by a support person or support persons at the Clinic.

In looking at age, there was a noticeable trend for younger patients to attend the Clinic alone. Of the patients aged 64 years and younger (working age), 38.7% attended alone. Of the patients aged over 65 years, only 17.7% attended alone, suggesting older patients had better support. The two youngest cohorts (patients aged 54 years and under) had the least support with 44% attended the Clinic alone.

A potentially vulnerable group is the 17.5% (n=24) Regional patients, who had no family support in all three domains of assessed support (in-home, external, clinic attendance).


51

Of such group:

• 75% were of working age (24% of all Regional working age), and 25% aged 65 years and over (9.7% of all Regional aged 65 years and over);• 83.3% had advanced cancer (19.4% of all Regional advanced cancer);• 20.8% were female (41.7% of all Regional females); 79.2% were male (36.5% of all Regional males).

Appropriate assessment of patient’s support networks is important for the identification and follow-up of these most vulnerable patients as an important supportive care service delivery issue.

Patient Care Responsibilities - Support Provided by Patient to OthersOf the total Regional group (n=137), 23.4% had care responsibility for one or more people. This was split at nearly two-thirds (62.5%) for working age patients, and 37.5% for those aged 65 years and over. Care for children (50%) featured strongly for the working age patients, whereas care for partner (58%) or other adults (including adult child) featured more strongly for the aged 65 years and over patients.


“A potentially vulnerable group is the 17.5% (n=24) Regional patients, who had no family support in all three domains of assessed support (in-home, external, clinic attendance). ”

Summary Of the new patients presenting to the Princess Alexandra Hospital Head and Neck Clinic in 2008, the percentage who were classified as living in a Regional area was slightly lower than for the Queensland general population. Additionally, the percentage of those presenting with advanced disease is higher than that for Metropolitan people. This data indicates a potential need that requires additional support by support persons at the Head and Neck Clinic.

Research literature (McGrath, 2001; McGrath, 1999) identifies particular challenges faced by those who relocate for treatment. Such persons who relocate face varying levels of separation from family and support networks, coping with serious disease and treatment in relative isolation away from normal support networks, coping with an unfamiliar community environments, additional financial burdens, accommodation issues and travel fatigue. Additionally, follow up and post discharge specialist and supportive care services may not be available locally for such patients. Consequently increasing the burden associated with the disease. Minimisation of stress and relocation-related stresses should be an ongoing concern for treatment and supportive staff.

In particular people relocating for specialist treatment are or can be faced with:

• Coping with an unfamiliar living and social environment during treatment. This is particularly relevant for outpatient treatment which can extend over a period of approximately 6 weeks;

• Separation from immediate support system. For example, a partner/spouse having to stay at home to care for children or provide income, those without a family member able or willing to travel with them to the treatment centre to provide emotional and practical support during the treatment process;

• Separation from their usual extended support system. This is particularly relevant for those whose verbal/oral communication ability is affected during treatment, and are unable to have an accompanying support person;

• Incurring additional financial costs associated with attending a treatment centre. The Patient Travel Subsidy Scheme contributes to the extra costs associated with this, but does not cover all costs. It is very possible for patients to be faced with significant direct financial costs;


53

• Stigma which can be associated with seeking financial help to cover additional financial costs associated with attending a treatment centre, such as approaching the Cancer Council for financial assistance;

• Additional financial burden and extra demands of maintaining two residential locations whilst undergoing treatment (residential home and any temporary accommodation they have close to the treatment centre);

• The immediacy of having to make arrangements to leave their residential home whilst they are absent for treatment. This can include making arrangements for someone to assume any care responsibilities that the person may have;

• Travel fatigue for those who have to commute long distances daily for treatment.

The higher percentages of persons attending the Clinic without an accompanying support person places particular emphasis in identifying such patients and ensuring additional support to enable patient understanding and participation in decision making. Whilst not exclusive to Regional patients, literature and other materials may be necessary to assist understanding and to assist patients to communicate relevant information later with significant others.

In particular, due to low level specialist and supportive care services outside of specific metropolitan locations, efforts should be employed to reduce unnecessary travel for Regional patients, travel frequency, length of stay and other relocation stresses. Appropriate and timely referral and exchange of information to health professionals within the patient’s local area should be a priority to enable location based care. Additionally, options such a telemedicine should be explored to minimise unnecessary travel for Regional patients. The issues faced by all who relocate for treatment have been enumerated in research literature in relation to relocation for treatment for other cancers, and also by the Australian Institute of Health and Welfare which identified simply having a rural and remote address and relocating for treatment as a source of health vulnerability. However, there is little research directly relevant to Regional patients with head and neck cancer, suprising considering the specific disease and treatment morbidity issues.


Canc

er D

iagn

osis

vs R

egio

nalit

y vs

Sup

port

Non

-Can

cer n

=16

Adv.

OPL

Can

cer n

= 14

5Ad

v. Ca

ncer

(Oth

er)

n= 7

5N

on-A

dv. C

ance

r n =

65To

tal C

ohor

t n=

301

RM

Tota

lR

MTo

tal

RM

Tota

lR

MTo

tal

RM

Tota

l

Age

n= 4

n= 1

2n=

16

n= 6

8n=

77

n=14

5n=

35

n= 4

0n=

75

n= 3

0n=

35

n= 6

5n=

137

n=16

4n=

301

44 y

rs a

nd u

nder

26

82

810

23

52

24

819

27

45 to

54

year

s0

11

1713

306

612

58

1328

2856

55 to

64

year

s1

12

2514

396

814

76

1339

2968

65 to

74

year

s1

12

1225

3711

617

87

1532

3971

75 to

84

year

s0

33

1215

2710

919

77

1429

3463

85 y

ears

and

ove

r0

00

02

20

88

15

61

1516

Gen

der

Mal

e2

57

5757

114

2829

5725

2853

112

119

231

Fem

ale

27

911

2031

711

185

712

2545

70

Mar

ital S

tatu

s

Mar

ried

/ Par

tner

ed2

810

3744

8124

1741

1720

3780

8916

9

Not

livi

ng w

ith

spou

se o

r par

tner

24

630

2858

1021

3113

1427

5765

122

Syst

ems

mis

sing

06

31

10

Tabl

e 9

Dem

ogra

phic

and

sup

por

t cha

ract

eris

tics

of n

ewly

refe

rred

hea

d an

d ne

ck c

ance

r pat

ient

s ch

arte

d ag

ains

t Reg

iona

l and

Met

rop

olit

an p

atie

nts

Den

otat

ions

: R

Re

gion

alM

M

etro

polit

an

References Anderson, Z.J., Lassen, C.F., & Clemmensen, I.H. (2008) Social inequality and incidence of and survival from cancers of the mouth, pharynx and larynx in a population-based study in Denmark, 1994-2003. European Journal of Cancer, 44(14), 1950-1961

Australian Bureau of Statistics 2006 Retrieved August 2010 from http://www.abs.gov.au/AUSTATS/abs@nsf/Lookup/3201.01Main+Features1Jun%202009

Australian Bureau of Statistics 2006 Census. Retrieved September 2010 from http://www.censusdata.abs.gov.au/ABSNavigation/prenav/LocationSearch?ReadForm&prenavtabname=Location%20Search&&&navmapdisplayed=true&textversion=false&collection=Census&period=2006&producttype=&method=&productlabel=&breadcrumb=L&topic=&

Australian Bureau of Statistics 2006-07 Retrieved August 2010 from http://www.abs.gov.au/AUSTATS/abs@nsf/Lookup/3218.0.Mair

Australian Bureau of Statistics 2009. Retrieved August 2010 from http://www.abs.gov.au/AUSTATS/[email protected]./DetailsPage/4102.0Sep%202009

Australian Bureau of Statistics 2009-10. Retrieved August 2010 from http://www.abs.gov.au/AUSTATS/[email protected]/DetailsPage/6302.0May%202010

Australian Demographic Statistics Series, Australian Bureau of Statistics, Dec 2009 to May 2010. Retrieved September 2010 from hhtp://www.abs.gov.au/ausstats/[email protected]./mf/6302.0.

Australian Institute of Health and Welfare, 2007. Older Australia at a glance (4th edition) Retrieved September 2010 from http://www.aihw.gov.au/publications/index.cfm/title/10402.

Australian Institute of Health and Welfare 2008. Retrieved September 2010 from Australia’s health 2008 Cat. No AUS 99, Canberra: AIHW.

Australian Social Trends 2008. Australian Bureau of Statistics. Retrieved August 2010 from http://www.ausstats.abs.gov.au/Austats/subscriber.nsf/0/761660D0

Australian Social Trends 2008. Australian Bureau of Statistics. Retrieved August 2010 from http://www.ausstats.abs.gov.au/Austats/subscriber.nsf/0/761660D0

Australian Social Trends 2008-09. Australian Bureau of Statistics. Retrieved August 2010 from http://www.abs.gov.au/AUSTATS/[email protected]./DetailsPage/4102.0Sep%202009

Australian Social Trends 2009. Australian Bureau of Statistics. Retrieved August 2010 from http://www.abs.gov.au/AUSTATS/[email protected]/Loopup/946A456AEDA949DCA

Balm, A.J.M. (2007) “Laryngeal and hypopharyngeal cancer: Intervention Approaches” In Head and Neck Cancer treatment, rehabilitation and outcomes (eds. E.C. Ward, & C.J. van As-Brooks). San Diego: Plural Publishing.


57

Buckwalter, A.E., Karnell, L.H., Smith, R.B., Christensen, A.J., & Funk. G.H. (2007) Patient-reported factors associated with discontinuing employment following head and neck cancer treatment. Archives of Otolaryngology - Head and Neck Surgery, 113(, 464-470.

Cancer Council of Australia. Retrieved September 2010 from http://www.cancer.org.au/Heathprofessionals/cancertypes/headandneckcancers.htm

Chandu, A., Smith, A.C.H., Rogers, S.N. (2006) Health-related Quality of Life in Oral Cancer: A review. Journal of Oral and Maxillofacial Surgery, 64, 495-502.

Chaukar, D.A., Walvekar, R.R., Das, A.K., Deshpande, M.S., Pai, P.S., Chaturvedi, P, Kakade, A, & D’Cruz. A.K. (2009) Quality of life in head and neck cancer survivors: a cross-sectional survey. American Journal of Otolaryngology, 30(3), 176-180.

Centrelink. Retrieved May 2010 from hhtp://www.centrelink.gov.au/internet/internet.nsf/payments/index.htm

Davies, L. & Welch, H.G. (2006) Epidemiology of head and neck cancer in the United States. Otolaryngology - Head and Neck Surgery, 135(3), 451-457.

Gaugler, J.E., Linder, J., Charles, W., Kataria, R., Tucker, G., & Regine, W. (2008) The proliferation of primary cancer caregiving stress to secondary stress. Cancer Nursing, 31(2), 166-123.

deGraeff, A., deLeeuw, J.R.J., Ros, W.J.G., Hordijk, G.J., Blijham, G.H. & Winnubst, J.A.M. (2001) Sociodemographic factors and quality of life as prognostic indicators in head and neck cancer. European Journal of Cancer, 37(3), 332-339.

Hammerlid, E., Bjordal, K, Ahlner-Elmqvist, M, Boysen, M, Evesen, J.F., Bioklund, A., Magnus, J., Kaasa, S., Sullivan, M., Westin, T. (2001) A prospective study of quality of life in head and neck cancer patients. Part I: At diagnosis. Laryngoscope, 111(4), 669-680.

Hammami, B., Bouayed, W., Siala, W., Toumi, N., Khabir, A., Boudawara, T., Frikha, M., Daoud, J., Charfeddine, I., Ghorbel, A. (2008) Les Sarcomes de lat tete et du cou. Anals D’oto Laryngolgies, 125(6), 294-300.

Hoffman, H.T., Karnell, L.H., Funk, G.F., Robinson, R.A., Menck, H.R. (1998) The national cancer data base report on cancer of the head and neck. Archives of Otolaryngology – Head and Neck Surgery, 124(9), 951-962.

Holland J. & Weiss T. (2008) The new standard of quality cancer care: integrating the psychosocial aspects in routine cancer from diagnosis through survivorship. Journal of Cancer 14, 425–428

Kelly, L.E. (2007) “Radiation and chemotherapy” In Head and Neck Cancer treatment, rehabilitation and outcomes (eds. E.C. Ward, & C.J. van As-Brooks). San Diego: Plural Publishing.

Kim, Y & Given, B.A. (2008) Quality of life of family caregivers of cancer survivors. Cancer, 112, 2556-2568

Konski, A.A., Pajak, T.F., Movas, B., Coyne, J., Harris, J., Gwede, C., Garden, A.,


Spencer, S., Jones, C., Watkins-Bruner, D. (2006) Disadvantage of men living alone participating in radiation therapy oncology group head and neck trials. Journal of Clinical Oncology, 24(25), 4177-4183.

deLeeuw, J.R., deGraeff, A, Ros, W.J., Blijham, G.H., Hordijk, G.J., Winnubst, J.A. (2001) Prediction of depression 6 months to 3 years after treatment of head and neck cancer. Head and Neck, 23(10), 892-898.

Llewellyn, C.D., McGurk, M., Weinman, J. (2005) Striking the right balance: A qualitative pilot study examining the role of information on the development of expectations in patients treated for head and neck cancer, Psychology, Health & Medicine, 10(2), 180-193.

McGrath, P. (2001) It’s horrendous – but really, what can you do? Preliminary Findings on the Financial Impact of Relocation for Specialist Treatment. Australian Health Review, 23 (3), 94-103.

McGrath, P. (1999) Accommodation for Patients and Carers During Relocation for Treatment for Leukaemia: A Descriptive Profile. Journal of Supportive Care in Cancer, 7(1), 6-10.

McGrath, P. (1999) The Experience of Relocation for Specialist Treatment for Haematological Malignancies. Cancer Strategy, 1, 157-163.

Murphy, B.A., Ridner, S., Wells, N., Dietrich, M. (2007) Quality of life research in head and neck cancer: A review of the current state of the science. Critical Reviews in Oncology/Hematology, 62(3), 251-267.

Nguyen, N.P., Frank, C., Moltz, C.C., Vos, P, Smith, H.J., Karlsson, U., Dutta, S., Midyett, A., Barloon, J. & Sallah, S. (2005) Impact of dysphagia on quality of life after treatment of head-and-neck cancer. International Journal of Radiation Oncology*Biology*Physics, 61(3), 772-778.

Patel, U.A., Lynn-Macrae, A., Rosen, F., Holloway, N., Kern, R. (2006) Advanced stage of head and neck cancer at a tertiary-care county hospital. Laryngoscope, 116(8), 1473-1477.

Penner, J.L. (2009) Psychosocial care of patients with head and neck cancer. Seminars in Oncology Nursing, 25(3), 231-241.

Rogers, S.N., Scott, J., Chakrabati, A., Lowe, D. (2008) The patients’ account of outcome following primary surgery for oral and oropharyngeal cancer using a ‘quality of life’ questionnaire” European Journal of Cancer Care, 17(2), 182-188.

Rozniatowski, O., Reich, M., Mallet Y. , Penel, N., Fournier C., & Lefrebre J.L.. (2005) Psychosocial factors involved in delayed consultation by patients with head and neck cancer. Head and Neck, 27(4), 274-280.

Saunders, N.A., Coman, W.B. & Guminski, A.D. (2007) “Cancer of the head and neck” In Head and Neck Cancer treatment, rehabilitation and outcomes (eds. E.C. Ward, & C.J. van As-Brooks). San Diego: Plural Publishing.

Semple, C.J., Dunwoody, L., Kernohan, W.G., McCaughan, E., Sullivan, K (2008) Changes and challenges to patients’ lifestyle patterns following treatment for head and

59

neck cancer. Journal of Advanced Nursing, 63(1), 85-93.

Sobin, L.H. & Wittekind, C. (eds). (2002) UICC TNM classification of malignant tumours (6th ed.). Heidelberg, Germany: Springer Verlag.

Smeele, L.E. (2007) “Oral, oropharyngeal and nasopharyngeal cancer: Intervention approaches” In Head and Neck Cancer treatment, rehabilitation and outcomes (eds. E.C. Ward, & C.J. van As-Brooks). San Diego: Plural Publishing.

Surbone, A., Baider, L., Weitzman, T.S., Brames, M.J., Rittenburg, C.N., Johnson, J. (2010) Psychosocial care for patients and their families is integral to supportive care in cancer: MASCC position statement. Supportive Care In Cancer (18)2, 255–263.

Taylor, J.C., Terrell, J.E., Ronis, D.L., Fowler, K.E., Bishop, C., Lambert M.T., Myers, L.L., Duffy, S.A., Bradford, C.R., Chepeha, D.B., Hogikyan, N.D., Prince, M.E., Teknos, T.N. & Wolf, G.T. (2004) Disability in patients with head and neck cancer. Archives of Otolaryngology – Head and Neck Surgery, 130, 764-769.

Tromp, D.M., Brouha, D.R., DeLeeuw, J.R.J., Hordijk, G.J. & Winnubst, J.A.M. (2004) Psychological factors and patient delay in people with head and neck cancer. European Journal of Cancer, 40(10), 1509-1516.

Vartanian, J.G., Carvalho, A.L., Toyota, J., Kowalski I.S.G. & Kowalski, L.P. (2006) Socioeconomic effects of and risk factors for disability in long-term survivors of head and neck cancer. Archives of Otolaryngology - Head and Neck Surgery, 132, 32-35.Whale, Z. (1998) Head and Neck Cancer: an overview of literature. European Journal of Oncology Nursing, 2(2), 99-105.

Winstanley, M. & White, V. (2008) “Chapter 1. Trends in the prevalence of smoking” In Tobacco in Australia: Facts and Issues (eds Scollo, M.M. & Winstanley, M.H.). Melbourne: Cancer Council of Victoria

Wong, Y-K, Tsai, W-C., Lin, J-C., Poon, C-K., Chao, S-Y, Hsiao, Y-L., Chan, M-Y., Cheng, C-S., Wang, C-C., Wang, C-P. Liu, S-A. (2006) Socio-demographic factors in the prognosis of oral cancer patients. Oral Oncology, 42, 893-906.

Ziegler, L., Newell, R., Stafford, N. & Lewin, R. (2004) A literature review of head and neck cancer patients information needs, experiences and views regarding decision-making. European Journal of Cancer Care, 13, 119-126

Documents

‘Who are our patients?’ A Socio-Demographic Profi le of Head and Neck Cancer Patients