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Canadian Symposium: Refining the Evaluation and Codification of the Brain in Persons Exposed to Alcohol in Gestation

Canada Northwest FASD Research Network: Sterling K. Clarren, MD, Jan Lutke, Paula Stanghetta

Table of Contents

Table of Contents ......................................................1

Forward..................................................................... 2

Introduction.............................................................. 3

The Organization of the Symposium ....................... 5

Preliminary Results for the Symposium ................... 7 Dimension of Brain Function Subscale (Brain Part 1) ............7 Dimension of Brain Structure Subscale (Brain Part 2) ............8 New Final Brain Code ...................................................................8

Results of Follow-up Subcommittee Deliberations.. 9 Revised Dimension: Brain Function Subscale (Brain Part 1)10 Revised Dimension: Brain Structure Subscale (Brain Part 2)..........................................................................................................11

Revised New Final Brain Code ...............................12

Discussion ...............................................................12

References................................................................13

Appendix 1: Participants in the Brain Symposium..14

Appendix 2 : Participants in the Subcommittee Deliberations ...........................................................18

Appendix 3: Use of Psychometric Tools Reaching Consensus – Phase 1 Meeting .................................19

Appendix 4: Use of Psychometric Tools Reaching Consensus – Phase 2 Meeting .................................20

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Forward The attached report is a summary of a meeting held with expert FASD diagnosticians from across Canada.

There was universal recognition that the Canadian Guidelines for FASD diagnosis had been an important document by endorsing the use of a multidisciplinary approach and clarifying diagnostic criteria.

As clinicians have worked with Guidelines, naturally, challenges and oversights have been recognized. Increasingly the complexity of the brain subscale of the diagnosis has been recognized as needing to include a mental health component and a need to separate the physical proofs of brain damage or disorganization from brain dysfunction. The resulting document reflects the issues of concern and some ideas for addressing them. There was NO suggestion that these recommendations were ready for implementation or should be a foundation for Guideline revision at this time. Rather they are presented as a template for stimulating research that leads to improved consistency and accuracy in diagnosis and clarity in qualifying individuals with FASD for appropriate intervention supports.

Sterling K. Clarren, MD, FAAP

CEO and Scientific Director,

Canada Northwest FASD Research Network

Correspondence should be addressed to:

Dr. Sterling K. Clarren Developmental Neurosciences and Child Health Child and Family Research Institute L408, 4480 Oak Street Vancouver, BC V6H 3V4

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Introduction Fetal alcohol syndrome (FAS) was proposed as the name for a unique and recognizable pattern of human malformation linked to in utero alcohol use in 1970. (1) The basic features of the disorder were codified in 1978 and have changed little since that time. (2) The FAS phenotype included a very specific, albeit mild, alteration in facial form, blunting of growth potential for length and weight, and abnormalities in brain formation leading to brain dysfunction. A wide range of other organ malformations were found occasionally, in less than 25% of cases, in those who presented with the hallmark triad of findings. Over the last thirty years, it has become clear that behavioural teratogenesis was the most disabling component of gestational alcohol exposure and that these behavioural deficits could be found in those exposed to alcohol without some or all of the physical features of FAS. This led to the need for a term that would encompass this broader group as well as FAS. The currently accepted term is fetal alcohol spectrum disorder (FASD).

No specific pattern of brain damage or brain dysfunction has been identified in FASD. That is not surprising given the apparent multiple pathways through which alcohol can alter the neuroanatomical and neurochemical structures and the wide range of dosage and timing exposure differences in differing gestations. The common final clinical descriptor of this damage is maladaptation. Affected individuals have considerable trouble meeting age and developmentally appropriate expectations at home, school or work, and in society. Maladaptation, of course, can occur from many sources. It can stem broadly from a poor environment, health problems, mental health issues or problems in cognition and processing or any combination of these. Those who are having adaptive problems are often initially offered help. Failure to benefit from that help often will lead to frustration on the parts of the helpers and the person being helped and to isolation and exclusion of the person who fails to improve.

It seems to be a societal assumption that those with maladaptation due to medical, mental health, or environmental reasons, should be able, with appropriate support, to become normally adaptive. Failure to respond to treatment becomes the fault of the person who is then seen as unwilling to improve. Those with maladaption due to brain damage are more likely understood to be disabled and seen as unable to improve without ongoing supports. Society seems more likely to place people in the first group unless a good deal of hard work has been done to prove that they belong in the second.

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So which group does the typical person exposed to alcohol in gestation fall into? It would seem they often fall into both. The history of alcohol exposure and other substance exposures in pregnancy suggests the risk for brain alterations, but frequently there are significant disruptions in early life that might contribute to learning and emotional problems and, often, mental health and physical health problems are encountered that could also be a cause of maladaptation. Making the differential diagnosis more complicated is the fact that the brain alterations from alcohol exposure are commonly microscopic, microcellular or neurochemical and not detected by clinical examination nor current clinical imaging techniques. The potential for alcohol to cause these “invisible” lesions that lead to diffuse forms of brain dysfunction has been well proven in animal models, but has not led to any clinical test in humans for detecting similar abnormalities as yet.

Surely, it is grossly unfair to demand of those with a disability that they should shoulder the responsibility for performance that is beyond them, and surely, it is equally unfair to declare people disabled who could and should go on to lead a normal (or nearly normal) life.

Sorting out the role of cognition and performance, temperament, mood and environment in the maladaptive complaints of those exposed to alcohol in pregnancy has become the central work of the diagnostic team in all FASD clinical programs. Because there are no clinical imaging tools as yet that reliably detect the alcohol induced neuroanatomic/neurochemical alterations, the clinics have turned to a functional assessment of the brain. It is held that when a broad enough and deviant enough pattern of dysfunction is found, it is reasonable to declare that the client is not likely to be able to perform normally in all aspects of function without appropriate supports over the long term. The person has a disability - whether the client has other aspects of his/her condition that might be righted with appropriate intervention or not.

It is the incumbent on professionals on FASD teams who use this approach to agree as closely as possible on the criteria for diagnosing disability in this way if systems are to respond with appropriate interventions and funding. To this purpose, the Canada Northwest FASD Research Network in conjunction with its sponsors the Canada Northwest FASD Partnership and the Public Health Agency of Canada hosted a symposium where participants could share their approaches and reach as much consensus as possible on the uses of cognitive and performance tests. This work would then contribute to the eventual replacement of “Guidelines” for FASD diagnosis with “Clinical Standards.”

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The Organization of the Symposium The objectives of the symposium were:

1. To summarize current practices with respect to diagnosing brain dysfunction in alcohol exposed individuals

2. To refine the diagnostic elements within the brain scale of the 4 Digit Diagnostic System for FASD

3. To develop new dual scaling for the brain and additional codes for etiology

4. To use the results of the symposium to publish a paper on outcomes and recommendations

Invitations were issued to prospective participants from all identified diagnostic programs in Canada. Approximately 90 accepted the invitation to attend (see Appendix 1). Professional backgrounds included: psychology, psychiatry, general practice medicine, pediatrics, speech and language pathology, occupational therapy, government, nursing and education. Almost every province and territory was represented.

At the outset, the Facilitator asked attendees to articulate their perspectives on the importance of the symposium. Summarized results of that discussion include:

We now have a critical mass (number of clinics in Canada) to reach a common language in diagnosing FASD

Outcomes resulting from this symposium should be useful and supportive, leading to a better understanding and support services for children with FASD, their families, and their communities

Early diagnosis leads to early intervention to prevent secondary disabilities; studies have proven that there are compelling, different outcomes due to interventions

Development of common data questions to collect common data in order to tell a common tale

When making a diagnosis, it is DUAL diagnosis, the mother and the child and this is the difficulty with FASD

One can argue that the diagnosis is a TRIPLE diagnosis, the child, the family, and the social support system; this is where the “Social Anthropologist” enters the picture

It was recognized that the first attempt to quantify brain abnormality in FASD was done through the 4-digit code developed at the University of Washington (3).

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The “Brain Scale” for static encephalopathy or brain damage within that code was defined in the following way:

4 Definite structural or neurological evidence confirming Central Nervous System (CNS) damage

3 Probable significant CNS dysfunction across 3 or more “domains” of cognition and performance

2 Possible evidence of CNS dysfunction, but less than at criteria for a rank 3

1 Unlikely structural, neurological or functional evidence of CNS impairment

This approach was adapted and included in the FASD: Guidelines for Diagnosis, published in the Canadian Journal of Medicine (4).

While this general approach has been found to be very helpful, the symposium group agreed that more precision would be needed for consistent diagnosis across programs and utility in providing patients with appropriate services. Firstly, the scale was not ordinal. A rank 4 relied on physical proof for brain damage, while rank 2 and 3 provided functional evidence that might imply brain damage. A patient could have both a 4 and a 3, 2, or 1 score at the same time. Additionally, the scale did not rank the severity of the patient’s adaptive or functional difficulties, but rather provided a statement of the level of certainty that brain damage was contributing to the maladaptation that was observed. That is to say, a person with a score of 2 might be much more impaired on a day to day basis than a person with a higher score, but the reasons for that impairment was less easily linked to brain performance. Secondly, the domains themselves were not fully agreed upon nor were the tests that should be used in measuring each domain defined at the time of publication of these documents. Finally, the scale does not clarify what share of adaptive problems are due to brain dysfunction and hence lead to disability and what share are due to other factors which also need attention but might be fully resolvable.

Many members of the group had previously participated in a group of meetings sponsored by the Canada Northwest FASD Research Network to define the cognitive domains and the best tests currently available for assessing each function for this population (see appendix). It was agreed to accept that work for the purpose of moving forward here in restructuring the brain scale and in adding other scales that would describe alternative etiologies of the patient’s problems.

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Over the next day the group worked as a whole in smaller groups and developed a general agreement that the following scales for use in describing the brain would clarify some of the problems with the present schema.

Preliminary Results for the Symposium It was deemed appropriate to develop separate Likert scales that could separately evaluate the severity of the brain dysfunction and the degree of likelihood that there was structural brain damage on some level. This would then be followed by a formula for combining the entries into a single summary code number. Before reaching the consensus below, both the abnormalities that would be needed for each rank and the appropriate name for that rank were considered by the group. The final suggestions are listed next.

Dimension of Brain Function Subscale (Brain Part 1) D Functional Disability with strong evidence for lifetime impairments

Parental and teachers reports of adaptive/academics < -2 SD AND “test battery” with 4 or more domains < -2 SD

C Functional Disability with probable evidence for lifetime implications

Parental and teachers reports of adaptive/academics < -2 SD AND “test battery” with 3 or more domains < -2 SD

Parental and teachers reports of adaptive/academics > -2 SD BUT “test battery” with 4 or more domains < -2 SD

B Functional Disability with possible lifetime implications

Parental and teachers reports of adaptive/academics < -2 SD AND “test battery” with 2 domains < -2 SD or 3 domains between -2 and -1.5 SD

A NO Functional Disability with lifetime implications identified at this time

Parental and teachers reports of adaptive/academics < -2 SD BUT “test battery” with no domains < -1.5 SD

Parental and teachers reports of adaptive/academics > -2 SD BUT “test battery” with no domains < -2 SD and 2 or less domains < -1.5 SD

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Dimension of Brain Structure Subscale (Brain Part 2)

New Final Brain Code

d Confirmed Findings of Structural Abnormality

Structural abnormalities confirmed on clinical images

Hard neurological signs and conditions

OFC < -3 SD

c Probable Findings for Structural Abnormality

Structural abnormalities confirmed on imaging tests that are not yet widely clinical, but used in multiple centres

Example: Functional MRI, MEG, PET, SPECT, Vol/Shape metrics

b

Possible or Unknown Findings for Structural Abnormality

Abnormal findings in new and/or highly experimental imaging studies

Soft neurological signs

No studies are available

a No Findings for Structural Abnormality

Normal neurological history, exam, and images (if obtained)

4 CONFIRMED Neurodevelopmental Injury

Prognosis for lifetime challenges with cognition and performance although appropriate interventions may improve functional outcomes

D (d, c, b, a), C (d, c)

3 PROBABLE Neurodevelopmental Injury

Lifetime challenges with cognition and performance likely but with some chance for return to full brain function with appropriate intervention

C (b, a), B (d, c)

2 POSSIBLE Neurodevelopmental Injury

Lifetime challenges with cognition and performance remain possible but it is more likely that full brain function can be restored with appropriate interventions

B (b, a), A (d, c)

1 NO EVIDENCE found for Neurodevelopmental Injury

A (b, a)

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The group recognized that in order to use these scales, further operationalization and clarification was needed for the testing domains that were to be employed, and a method for scoring severity of deviation on those tests was also necessary. The group recommended that a subcommittee be formed to perform these tasks. That group met subsequently and deliberated for two days. The elected members of the subcommittee are listed in appendices at the end of this document.

The symposium also considered the issue of codifying other positive and negative factors that would impact adaptation in individuals who were assessed. Recognition of these risk and resiliency factors as well as co-morbid conditions could lead to more holistic interventions. While there was conceptual agreement that this is an important area to attempt to codify, there was little agreement on how this might be done. The group felt that every effort should be taken to use already existing coding systems for this task like the International Classification of Diseases (ICD) and the Diagnostic and Statistical Manual of Mental Disorders (DSM) rather than reinventing. In the end no specific recommendations were made but further study was recommended.

Results of Follow-up Subcommittee Deliberations The domains recommended for specific evaluation are:

Cognition

Communication

Achievement

Memory

Attention

Executive Function

Motor Skills

Adaptive Function

The first seven domains are studied directly with the subject, while Adaptive Function is measured with input from parents, teachers or others who know the subject.

The subcommittee additionally recommended that the following specific approach be used to operationalize the subscales.

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Revised Dimension: Brain Function Subscale (Brain Part 1) D Conclusive Evidence of Functional Disability

2 or more areas of maladaptive behaviour (see DSM-IV for a list of areas) ≤ - 2SD AND IQ ≤ 70 OR

2 or more areas of maladaptive behaviour (see DSM-IV for a list of areas) ≤ -2SD AND IQ >70 AND 3 domains (at least 2 of them from direct measures - 1 from Communication/Achievement and 1 from Memory, Attention or Executive Function) ≤ -2 SD

C Sufficient Evidence of Functional Disability

1 or 0 areas of maladaptive behaviour AND IQ ≤ 70 OR

2 or more areas of maladaptive behaviour (see DSM-IV for a list of areas) ≤ -2SD AND IQ >70 AND 2 domains (both of them from direct measures - 1 of them from Communication/Achievement and 1 from Memory, Attention or Executive Function) ≤ -2SD

B Some Evidence of Functional Disability

2 or more areas of maladaptive behaviour (see DSM-IV for a list of areas) ≤ -2SD AND IQ >70 AND 1 domain ≤ -1.5SD

A Insufficient Evidence of Functional Disability

Does not meet the criteria for D, C, B

Note: At 3% discrepancy level, occurring at a base rate of no more than 3% of the time (index discrepancies, i.e. verbal comprehension vs. perceptual)

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Revised Dimension: Brain Structure Subscale (Brain Part 2)

This approach eliminates the ambiguity in diagnosis and emphasizes the importance of finding defuse brain dysfunction in connection with maladaptation.

d Confirmed Structural Abnormality

Structural abnormalities confirmed on clinical images if obtained or

Hard neurological signs and conditions or seizure disorder (with explanation) or

OFC < -3 SD

c Probable Structural Abnormality

OFC <-2SD or

Structural abnormalities confirmed on imaging tests that are not yet widely used clinically, but used in multiple centers; and if obtained or

Hard Neurological Signs - Functional MRI, MEG, PET, SPECT, Vole/Shape metrics, Event Related Potential

b Possible Structural Abnormality

Abnormal findings in new and or highly experimental imaging studies or

Soft neurological signs (including evidence of abnormal sensory function) or

Single seizures (without clear etiology) or

Abnormal EEG without clinical correlates

a No Structural Abnormality

Normal neurological history, exam, and images (if obtained)

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Revised New Final Brain Code

Discussion The subcommittee felt that the term Neurodevelopmental Disability was a more suitable term than Neurodevelopmental Injury since the lesion was formative and not destructive in the embryogenesis of the brain.

There is no research base as yet to support this organizational approach. Rather this approach is suggested to foster research that could confirm the accuracy of these positions or would help to adjust them. With the acceptance of this approach the Canada Northwest FASD Research Network (CanFASD Northwest) will move immediately to perform the research needed to test the validity and utility of this new schema.

This approach to evaluating and codifying the brain emphasizes an important aspect of FASD diagnosis that has been overlooked or neglected. In most jurisdictions, funding has only been provided for one FASD evaluation in a life time and most often this evaluation takes place between the ages of 7 and 18 when children are old enough for valid testing using the test battery and still of minority age. While it is reasonable to make an FASD diagnosis accurately at one point in time, the brain of a person with FASD, like any one, evolves over time becoming more or less adaptive with age. Children at risk for FASD should be identified as early as possible and supported and

4 PERVASIVE

Neurodevelopmental Disability (with lifetime implications)

D (d, c, b, a), C (d, c)

3 CONFIRMED

Neurodevelopmental Disability (with lifetime implications)

C (b, a), B (d, c)

2 POSSIBLE

Neurodevelopmental Disability (with follow-up required)

B (b, a), A (d, c)

1 NO

Neurodevelopmental Disability not identified at this time (follow-up determined by specifics of the case)

A (b, a)

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tracked until they are old enough for definitive assessment. Those who are diagnosed deserve to be reevaluated for brain function, (not diagnosis) at regular intervals well into adulthood for interventional planning. Adults who have never been diagnosed would benefit from diagnosis too. The symposium participants strongly endorsed FASD Centers that could offer appropriate diagnosis across the lifespan and follow up reassessment of brain function as needed.

References 1. Jones KL, Smith DW. Recognition of the fetal alcohol syndrome in early infancy.

Lancet1973;2(7836):999-1001.

2. Clarren SK, Smith DW. The fetal alcohol syndrome. N Engl J Med. 1978 May 11;298(19):1063-7.

3. Astley SJ, Clarren SK. Diagnostic guide for fetal alcohol syndrome and related conditions: the 4-Digit Diagnostic Code. 2nd ed. Seattle: University of Washington Publication Services; 1999.

4. Chudley AE Conry, J, Cook J L, Loock C, Rosales T, LeBlanc N. Fetal alcohol spectrum disorder: Canadian Guidelines for Diagnosis CMAJ • 2005; 172 (5 suppl), S1-S21

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Appendix 1: Participants in the Brain Symposium Prov Name Title Organization

Dr. Gail Andrew Pediatrician FASD Clinical Services Glenrose Rehabilitation Hospital, Edmonton, AB

Connie Alton Speech-Language Pathologist (S-LP)

FASD Clinical Services Glenrose Rehabilitation Hospital, Edmonton, AB

Dr. Jacqueline Pei Psychologist FASD Clinical Services Glenrose Rehabilitation Hospital, Edmonton, AB

Dr. Carmen Rasmussen

Developmental Psychologist Department of Pediatrics, University of Calgary and Glenrose Rehabilitation Hospital, Edmonton, AB

Mary Ellen Baldwin Psychologist FASD Clinic, Alberta Children’s Hospital. Calgary, AB Dr. Ben Gibbard Developmental Pediatrician FASD Clinic, Alberta Children’s Hospital

Calgary, AB Pearl Park S-LP FASD Clinic, Alberta Children’s Hospital

Calgary, AB Melanie Bergmann S-LP FASD Assessment and Diagnostic Clinic

Renfrew Educational Services, Calgary, AB Audrey McFarlane Executive Director

Board Chair Lakeland Centre for FASD Cold Lake, AB Canada Northwest FASD Research Network

Dr. Marty Mrazik Neuropsychologist Lakeland Centre for FASD Cold Lake, AB and Canadian FASD Diagnostic and Training Centre Ltd. Redwater, AB

Dr. Hasu Rajani Pediatrician Lakeland Centre for FASD, Cold Lake, AB Dr. Brent A. Symes Registered Psychologist Lakeland Centre for FASD

Randall Symes Psychological Services Edmonton, AB Vanna Thiel S-LP Aspen Regional Health Authority

Cold Lake Community Health Services, Cold Lake, AB Sharon Winik Occupational Therapist (OT) Clinical Lead

Occupational Therapy Aspen Regional Health Authority Cold Lake Community Health Services. Cold Lake, AB

Dr. Johannes Botha Physician Canadian FASD Diagnostic and Training Centre Ltd. Redwater, AB

Dr. Valerie Massey Clinical Psychologist Canadian FASD Diagnostic and Training Centre Ltd. Redwater, AB and D-V Massey & Associates Clinical & Consulting Psychologists, Edmonton, AB

Dr. Charlotte Foulston

Pediatrician Regional FASD Program A Division of Bridges Family Programs Medicine Hat, AB

AB

Janice Penner Project Officer Alberta Children Services FASD Initiative, Edmonton, AB

Dr. Elizabeth Bredberg

Education Consultant Complex Developmental Behavioural Conditions (CDBC) Clinic, Sunny Hill Health Centre for Children Vancouver, BC

Janice Forsey S-LP CDBC Clinic, Sunny Hill Health Centre for Children, Vancouver, BC

BC

Dr. Christine Lilley Psychologist CDBC Clinic, Sunny Hill Health Centre for Children Vancouver, BC

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Dr. Christine Loock Pediatrician CDBC Clinic, Sunny Hill Health Centre for Children Vancouver, BC

Dr. Jonathan Down Pediatrician CDBC Clinic, Vancouver Island Health Authority (VIHA), Queen Alexandra Health Centre for Children Victoria, BC

Dr. Kelly Price Psychologist CDBC Clinic, VIHA, Queen Alexandra Health Centre for Children, Victoria, BC

Adelle Rama OT CDBC Clinic, VIHA, Queen Alexandra Health Centre for Children, Victoria, BC

Dr. Kim Kerns Psychologist Department of Psychology University of Victoria, Victoria, BC

Kristal Bodaly S-LP The Asante Centre for FAS, Maple Ridge, BC Dr. Julie Conry Psychologist The Asante Centre for FAS, Maple Ridge, BC Carol Woodworth S-LP The Asante Centre for FAS, Maple Ridge, BC Dr. Bruce Pipher Clinical Director and

Psychiatrist Interior Health Children’s Assessment Network (IHCAN), Kelowna, BC

Dr. Tavi Nicholson Psychologist IHCAN, Kelowna, BC Dr. Eiko Waida Pediatrician IHCAN, Kelowna, BC Dr. Diane Russell Psychologist Dr. Diane L. Russell & Associates, Neuropsychological

& Assessment Services Nanaimo, BC Dr. Jeffrey Simons Head, Department of

Pediatrics, NW HSDA Prince Rupert Regional Hospital Prince Rupert, BC

Kathy Horne Psychologist FASD Circle – Victoria Adult Assessment Clinic, Victoria, BC

Dr. Jeanine Harper Psychologist/Director Fraser Development Clinic, New Westminster, BC Kim Houlihan S-LP Fraser Development Clinic, New Westminster, BC Dr. Tod Sorokan Pediatrician Fraser Development Clinic, New Westminster, BC Anne Fuller Provincial FASD Consultant CYSN Policy/Provincial Operations

Integrated Policy and Legislation Team Ministry of Children and Family Development Victoria, BC

Honourable Linda Reid

Provincial Minister Minister of State for Child Care Victoria, BC

Jonathan Barry

Executive Assistant to the Honourable Linda Reid

Minister of State for Child Care Victoria, BC

Christine N. Lewis Ministerial Assistant to the Honourable Linda Reid

Minister of State for Child Care Victoria, BC

Dr. Terry Benoit Developmental Pediatrician Clinic for Alcohol and Drug Exposed Children (CADEC) Children’s Hospital of Winnipeg, Winnipeg, MB

Dr. Albert Chudley Pediatrician CADEC Children’s Hospital of Winnipeg, Winnipeg, MB

Dr. Ana C. Hanlon-Dearman

Developmental Pediatrician CADEC Children’s Hospital of Winnipeg, Winnipeg, MB

Brenda Fjeldsted OT CADEC Children’s Hospital of Winnipeg, Winnipeg, MB

Dr. Sally Longstaffe Pediatrician CADEC Children’s Hospital of Winnipeg, Winnipeg, MB

MB

Mary Millar Clinic Coordinator CADEC Children’s Hospital of Winnipeg, Winnipeg, MB

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Shelley Proven S-LP CADEC Children’s Hospital of Winnipeg, Winnipeg, MB

Dorothy Schwab OT CADEC Children’s Hospital of Winnipeg , Winnipeg, MB

Holly Gammon FASD Program and Policy Consultant

Healthy Child Manitoba, Winnipeg, MB

NB Dr. Lori Vitale Cox Psychologist Eastern Door FASD Diagnostic Team, Moncton, NB NF Dr. Ted Rosales Pediatrician and Geneticist St. John’s, NF NU Wayne Podmoroff Psychologist

Baffin Correctional Centre, Department of Justice Government of Nunavut, Iqaluit, NU

Dr. Ellen Fantus Psychologist Motherisk Program Hospital for Sick Children, Toronto, ON

Dr. Mary Motz Manager of Clinical Services (Certified Psychologist)

Mothercraft/Breaking the Cycle, Toronto, ON

Dr. Irena Nulman Physician Motherisk Program Hospital for Sick Children, Toronto, ON

Dr. Kris Pryke Psychologist The Wellington County FASD Diagnostic Team Wellington, ON

Dr. Brenda Stade Pediatrician FASD Clinic St. Michael’s Hospital, Toronto, ON

Dr. L.A. Scott Pediatric Neuropsychologist NeuroDevelopmental Services Scott and Associates Waterloo, ON

Dr. Claire Sullivan Psychologist Waterloo FASD Team, Waterloo, ON Dr. Jocelynn Cook Senior Policy Analyst Health Information, Analysis, and Research Division,

Health Canada, Ottawa, ON Valerie Flynn Manager, FASD Strategic

Programming Unit First Nations and Inuit Health Branch Ottawa, ON

ON

Mary Johnston Manager, FASD Team Division of Childhood and Adolescence Public Health Agency of Canada, Ottawa, ON

Dr. Dolores Logan Family Physician The FASD Centre The Regina Community Clinic, Regina, SK

Dr. Carrie L. Hicks Registered. Developmental Psychologist

Prince Albert Mental Health Centre Prince Albert, SK

Dr. Ayaz Ramji Pediatrician Victoria Square Medical Clinic Prince Albert, SK

Karin Heaney OT Child Development Clinic School Age Team, Prince Albert, SK

Dr. Jo Nanson Psychologist Private Practice, Saskatoon, SK Dr. Mary E. Vandergoot

Registered Developmental Psychologist

Youth Resource Centre Mental Health & Addiction Services, Saskatoon, SK

Crystal Day OT Regina Child & Youth Services, Regina, SK Dr. Della Hunter Registered Developmental

Psychologist, Coordinator, Cognitive Disabilities and Diagnostic Support

Regina Child & Youth Services Regina, SK

Donna Jackson S-LP Children’s Program Wascana Rehabilitation Centre, Regina, SK

SK

Rae Lynn Lang OT Children’s Program Wascana Rehabilitation Centre, Regina, SK

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Dr. Heather Switzer Psychologist Children’s Program Wascana Rehabilitation Centre, Regina, SK

Dr. Tim Landry Psychologist Neuropsychology Service Regina Qu’Appelle Health Region, Regina, SK

Dr. Patricia Blakley Pediatrician Alvin Buckwold Child Development Program Saskatoon, SK

Dr. Bryan Acton Psychologist Alvin Buckwold Child Development Program Saskatoon, SK

Anne Braithwaite S-LP Children and Youth FASD Diagnostic and Support Teams (Preschool Team) C/o Child Development Centre, Whitehorse, YK

Leona Corniere Registered Psychologist Children and Youth FASD Diagnostic and Support Teams (Preschool Team) C/o Child Development Centre. Whitehorse, YK

Dr. Barbara Grueger Pediatrician Children and Youth FASD Diagnostic and Support Teams (Preschool Team) C/o Child Development Centre, Whitehorse, YK

Donna Jones Psychologist Children and Youth FASD Diagnostic and Support Teams (Preschool Team) C/o Child Development Centre. Whitehorse, YK

Pauline Craig OT Children and Youth FASD Diagnostic and Support Teams (School –age Team) C/o Child Development Centre, Whitehorse, YK

Wendy Kitchen S-LP Children and Youth FASD Diagnostic and Support Teams (School –age Team) C/o Child Development Centre, Whitehorse, YK

YK

Rachel Moser S-LP Children and Youth FASD Diagnostic and Support Teams C/o Child Development Centre, Whitehorse, YK

Staff: Canada Northwest FASD Research Network

Dr. Sterling Clarren Helene Donahue Jan Lutke Krystina Tran Paula Stanghetta

CEO and Scientific Director Managing Director Clinical Research Manager Administrative Assistant Facilitator

Canada Northwest FASD Research Network L408 – 4480 Oak Street, Vancouver, BC Paula Stanghetta and Associates 69 Trailview Drive, Kitchener, ON

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Appendix 2 : Participants in the Subcommittee Deliberations Dr. Sterling Clarren, CEO & Scientific Director, Canada Northwest FASD Research Network, and Clinical Professor, Department of Pediatrics, University of British Columbia, Vancouver, BC

Dr. Hilary Cartwright, Psychologist, Centre for Alcohol and Drugs Abused Children, Winnipeg, MB

Dr. Julie Conry, Psychologist, Asante Centre for FAS, Maple Ridge, BC

Dr. Ana Hanlon-Dearman, Assistant Professor, Pediatrics and Child Health, University of Manitoba, and Developmental Pediatrician, Children’s Hospital of Winnipeg, Winnipeg, MB

Dr. Della Hunter, Psychologist, Regina Child and Youth Services, Regina, SK

Dr. Kelly Price, Psychologist, Queen Alexandra’s Health Centre for Children’s Health, Vancouver Island Health Authority, Victoria, BC

Dr. Kim Kerns, Psychologist, Department of Psychology, University of Victoria, Victoria, BC

Dr. Christine Lilley, Psychologist, Sunny Hill Health Centre for Children, Vancouver, BC

Dr. Valerie Massey, Clinical Psychologist and Neuropsychologist, D-V Massey & Associates, Edmonton, AB and Canadian FASD Diagnostic & Training Centre Ltd., Redwater, AB

Dr. Jo Nanson, Psychologist, Private Practice, Saskatoon, SK

Staff

Ms. Jan Lutke, Clinical Research Manager, Canada Northwest FASD Research Network, Vancouver, BC

Ms. Krystina Tran, Administrative Assistant, Canada Northwest FASD Research Network, Vancouver, BC

Ms. Paula Stanghetta, Facilitator, Paula Stanghetta & Associates Inc., Kitchener, ON

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Appendix 3: Use of Psychometric Tools Reaching Consensus – Phase 1 Meeting

Psychometric Tools Used for Evaluating Individuals with FASD: Reaching Consensus – Phase 1

Canada Northwest FASD Research Network: Vancouver, British Columbia June 13-14, 2007

Table of Contents


Introduction.............................................................. 2

Session Purpose and Preparation ............................. 2

Session Process......................................................... 3

The Individual....................................................................4

Psychometric Tools for Cognition.................................5

Psychometric Tools for Academic Achievement ........6

Psychometric Tools for Memory (includes working memory) ..............................................................................6 Psychometric Tools for Attention and Hyperactivity.7

Psychometric Tools for Executive Functioning ..........8

Psychometric Tools for Adaptive Behaviour .............10

Summary.................................................................. 11

Appendix A: Agenda................................................12

Appendix B: Participant List ...................................13

Appendix C: Post-Session Psychometric Tools Matrix (consensus achieved) ...................................16

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Introduction

The Canada Northwest FASD Research Network (CanFASD Northwest) has been collaborating with diagnostic clinics to support their efforts in conducting comprehensive assessments for individuals with FASD. During several months of 2007, CanFASD Northwest focused on the approaches and tools that clinics were using to assess individuals with FASD. This exploration led to the realization that there was little consistency among clinics regarding the psychometric tools that were used by multi-disciplinary teams in the assessment. In an effort to create a common and consistent pan-Canadian approach for assessing individuals with FASD, CanFASD Northwest decided to invest resources in a process that would begin to address this inconsistency.

A two-phase process was devised to bring together representatives of all disciplines working within diagnostic clinics who use a multi-disciplinary approach. The first phase involved psychologists from each of the clinics who would come together for two days to achieve consensus on the psychometric tools to be use in diagnosis. The second phase would involve all others who form a multi-disciplinary diagnostic team (such as speech and language therapists, occupational therapists, and pediatricians) and include a small representative group from the first phase to build continuity. During each phase, the groups would review current approaches and tools for their respective disciplines and then work towards consensus on the most effective tools to use in assessment.

CanFASD Northwest hosted both sessions in Vancouver, BC. The first session was held on June 13 and 14, 2007. The second session occurred on September 18 & 19, 2007. This report chronicles the process and outcomes of the first session.

Session Purpose and Preparation

The purpose of the session was to bring together psychologists (who are currently assessing individuals) to achieve consensus on the tools that would be used consistently across Canada Northwest’s diagnostic clinics.

Approximately 30 individuals participated in the session representing 14 clinics from the provinces and territories in the Canada Northwest region.

In advance of the session, a research assistant was hired to collect information on the tools currently being used by clinics across Canada’s Northwest. A survey was distributed to all clinics, asking them to complete and return it to CanFASD Northwest.

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The information was collated into a table and included tools used in the following 11 areas of assessment:

1. Cognition

2. Academic Achievement

3. Memory

4. Executive Function and Abstract Reasoning

5. ADHD (and attention more generally)

6. Adaptive Behaviour, Social Skills and Social Communication

7. Neurological Signs (sensory motor)

8. Communication: Receptive and Expressive

9. Supplementary Measures (Emotional Status)

10. Pediatrician Administered Measures

11. Others

The first six categories were the focus of the first session. The others were addressed in a second session.

It was evident from the information collected that, for the most part, there was tremendous variability in the instruments used for measurement of each function although the tools that were used were valid and appropriate. Coming to consensus was seen as an important and timely exercise.

Session Process

The session began with opening remarks designed to provide background on CanFASD Northwest, set the context for the event, emphasize the importance of the task and ensure clarity on the expectations and outcomes of the two-day meeting. This was followed by a brief presentation and large group discussion that focused on the current picture of assessment. An explanation of the pre-session survey of clinics was offered along with a review of the matrix of tools, which participants reviewed prior to the

4

session. The balance of the session consisted of small group discussions, then large group consensus building to identify the psychometric tools the group would agree to use. The session ended with a discussion about phase two and how to ensure continuity between both sessions.

In setting the context, participants were informed that CanFASD Northwest was in the process of preparing to collect consistent and cohesive data that could be translated to informed decision-making and policy. The outcomes of this session would assist in creating a system in which such data could be collected. Recognizing that data is very political and sensitive, the work of this group was seen as extremely important in paving the way ahead.

Participants were advised that in working towards consensus on the tools, it would be necessary to establish some criteria about the population being assessed that would guide their discussion about the tools. The five criteria proposed reflected a most typical case scenario and included:

The Individual Is between 4 and 18 years of age

Has an IQ between 70 and 100

Speaks English adequately (“fluently: was initially in the criteria, but the group agreed to change it to “adequately”)

Has no sensory deficits

Has experience in life (i.e. it is valid to use tests for the general population)

Participants were encouraged not to hold back recommendations on tools, if lack of money was an issue, CanFASD Northwest would address this outside of the meeting.

The group was also advised that no one was mandating that they use the tools identified through this process. It was hoped that participants would share the outcomes of this meeting with their teams, discuss the merits of the tools identified and consider using the tools in an effort to work towards consistency and, eventually, data collection. CanFASD Northwest would be in touch with clinics once this process is over to determine which ones would commit to using the tools. As far as CanFASD Northwest is concerned, clinics could begin using the tools whenever they are ready to do so.

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Participants were reminded that the results of this meeting would bring all those working in diagnosis a step closer to being able to tell a story to the government about FASD and ultimately to support patients, families and communities.

Please Note: The authors of this document assume a certain level of knowledge with regard to the variety of tools discussed from here forward. As such, the tools discussed are most often listed using the acronym form. For the full names, please refer to the Psychometrics Tools Matrix in Appendix C.

Psychometric Tools for Cognition

The scan of clinics identified 16 different tools that were being used to assess Cognition. One group of tests was reportedly used by (between) 9 - 12 clinics. Therefore, this category was chosen to start the discussions since there already seemed to be high agreement on the best tool to use.

As a result of the small group review of tools and the large group discussion, the Wechsler Intelligence Scale (WISC) group of tests was recommended across all age groups to measure Cognition. Specifically, these included:

WPPSI-III for under 6

WISC IV for ages 6 to 16

WAIS III for 16-18

WPPSI-III was chosen based on the fact that it is widely used, there is continuity across ages and it has Canadian norms. A recommendation for an alternative tool was the DAS (which is particularly useful for 4-5 year olds). It is brief, user friendly and easily understood. It is theoretically sound, but does not have Canadian norms. The Stanford-Binet Intelligence Scales, 5th Edition (SB-5) was offered as an alternative tool for older age groups and also for ages 4-5. A final alternate was the McCarthy Scales of Children’s Abilities (MSCA) for young children. An important point to note is that the group strongly opposed the idea of using any of the abbreviated forms of IQ tests for the purposes of making an FASD diagnosis – the WISC scale has a screening or shortened version that some people use.

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Psychometric Tools for Academic Achievement

Diagnostic clinics identified nineteen tools for assessing this domain. One of them, the WIAT-II, was being used by (between) 9 - 12 clinics. While the groups discussed many other tools, the final consensus on this domain was:

BBCS-R for 6 and under (with K-SEALS as an alternate)

WIAT-ll for ages 6 to 16 for math, reading and spelling (with WJ III as an alternate)

TOWL-3 (story portion only) for 6 to 16 for written expression (with WJ III as an alternate)

WRAT 4 for ages 16 and older

The BBCS-R was selected for two main reasons: it was described as quick to administer and, while it was difficult to measure this domain at this age, this was still seen as a good tool to assess the domain.

The advantages of using the WIAT-II included: it had Canadian norms and was comparable with the WISC. It was noted that there were problems with the reading comprehension subtest and at times it may be helpful to supplement it with other measures, such as the GORT-4. Participants commented that the teacher report was very relevant in the assessment whether it confirms or contrasts with test results.

The TOWL-3 was chosen since it assesses written expression much better than the WIAT-II.

For the alternative, the WJ-R, it was noted that there are no Canadian norms, but that it had good supplementary tests.

Note: Since the session we have learned that Canadian norms may be published in the future. These will most likely be based on Form B, which uses items with Canadian content (e.g. Canadian coins).

Psychometric Tools for Memory (includes working memory)

Thirteen tools were currently being used by clinics to assess the Memory domain. Three of them – the Children’s Memory Scale (CMS), the Rey Complex Figure Test and Recognition Trial, and the Wide Range Assessment of Memory and Learning (WRAML2) were being used by (between) 6 - 8 clinics.

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Participants noted several key considerations in choosing tools for this domain:

There were many ways of interpreting memory performance

There was no “perfect” test since there were many aspects of memory

There were always issues around justifying the time to administer tests

The group agreed that it would be useful to divide this domain into four sub-domains and named them accordingly as:

Immediate memory

Delayed memory

Verbal memory

Non-verbal memory

The tools agreed upon included:

NEPSY-II for those under 6

WRAML2 (with either CVLT-C/CVLT- II or the CAVLT/RAVLT used as supplementary tools) for ages 5 and older

Note: The CMS and Rivermead Behavioural Memory Test (RBMT) were considered, but not chosen due to limitations identified by participants.

Psychometric Tools for Attention and Hyperactivity

Note: The group began with a discussion about the name of this domain and offered a suggestion for re-naming it. The essence of the discussion was that if the domain is called Attention Deficit and Hyperactivity Disorder (ADHD), it implies a DSM-IV diagnosis and the group felt that the name of the domain should not be the name of a diagnosis. More accurately, the name of the domain is Attention and Hyperactivity – or Attention and Activity Level. Participants agreed to re-name this domain Attention and Hyperactivity.

Clinics identified approximately 25 tools that were used to assess Attention and Hyperactivity. Participants noted a number of areas that required discussion by the group prior to finalizing the tools for this domain.

Participants indicated that “Attention” had been divided into “Focused Attention” and “Sustained Attention”. Two key aspects of attention being hyperactivity and

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distractibility. It was stressed that both attention and hyperactivity are measured during assessment, not ADHD. Therefore, a suggestion was made (and accepted) to remove the second “D” from the acronym ADHD.

In recognizing the complexity of this domain, participants acknowledged the need for several sources of reliable information that can be used, including:

Clinical Setting: Psychometric tools

School/Home Setting: Observation by Psychologist

Standardized Questionnaires: Parents and teachers complete

When all three of the above sources were used, it generally results in a more accurate assessment. For example, a child may test well in a clinical setting yet may not do well in a school setting (or vice-versa).

The group was able to agree on a questionnaire to measure attention and hyperactivity:

The BASC-2 for all age groups

Participants felt that it was also desirable to obtain a direct psychometric measure of sustained attention, such as a Continuous Performance Test (CPT). Several different CPTs were discussed including the TOVA, IVA+Plus, and Conners’ Continuous Performance Test II (CPT II). However, relatively few clinics currently used such a measure. Furthermore, even fewer individuals have experience with more than one of them. Therefore it was impossible to make an informed decision on a CPT measure. The group recommended that funding be made available to some clinics to purchase and use two of the measures so people would have experience with more than one measure.

Ultimately it was concluded that although many members of the group would like to explore the use of such a measure, it is not currently part of a standard assessment. This decision should be reviewed in the future. Participants noted that to measure “sustained” attention, the task must be long enough to obtain good data, that it must be engaging and that it must be simple to follow.

Psychometric Tools for Executive Functioning

The discussion on this domain began with an agreement to only consider Executive Functioning, since it was thought that the Speech and Language Pathologists (S-LPs)

9

and Occupational Therapists (OTs) would be dealing with Abstract Reasoning (or at least, verbal reasoning) in the next meeting.

Participants named twenty-six different tools that they were currently using. However, one was used by (between) 9-12 clinics. The Behaviour Inventory of Executive Function (BRIEF), for those aged 6 to 18. However, the final recommendation for this domain were:

BRIEF/BRIEF-P for all ages

NEPSY II for under 6 and 6-8 year olds

RCFT for those aged 6 to 18

WISC-IV or WAIS-III Digit Span, Backwards and Letter-Number Sequencing for those aged 6 and up

WRAML2 Verbal Working Memory and Symbolic Working Memory for those aged 9 and up

D-KEFS for ages 8 and up Subtests: -Sorting -Color-Word Interference -Verbal Fluency -Design Fluency

Children’s Colour Trails Test (CCTT) for ages 8 to 16 years

On a final note, participants decided that working memory be divided into “Span” and “Manipulation”. Span has been dealt with in the Memory discussion while manipulation is in Executive Function.

Note: Meyers and Meyers (1995) RCFT criteria were noted to be the most commonly used scoring system among participants. Owing to the multiple processes underlying performance on the RCFT, the use of an organizational or qualitative scoring system was also raised as an item for future discussion.

A recommendation was made to convene another meeting to discuss how findings on the diverse Executive Functioning tests should be interpreted in evaluating this domain.

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Psychometric Tools for Adaptive Behaviour

One of the first points raised by participants was the suggestion to change the title of this section by removing the term “social communication” from the current discussion and bring it forward to the Phase 2 session to be dealt with there. The suggested was accepted.

Approximately 18 tools were identified in this domain. Two tools are currently being used by the majority of clinics the VABS-II and the ABAS-II. Considerable discussion ensued in relation to this domain.

It was not possible to reach agreement on one specific tool. However, the field was narrowed to either of the following:

VABS-II

ABAS-II

The main advantages of the ABAS-II were seen to be its questionnaire format, resulting in considerable timesavings for the clinician. The VABS-II also has a questionnaire format available, but some felt that it was less “user-friendly.” Many were concerned about the impact of poor literacy, inappropriate expectations, or other forms of parent/teacher bias on scores based on a questionnaire. Some psychologists expressed concern about smaller numbers of items relevant to older children and teens on the VABS-II.

In summary, a decision about which measure to be used needed to be made in light of the following criteria:

Amount of time available

Parent literacy

Age of child

Approach: one-on-one interview or survey

When the ABAS-II was used, the psychologist should review the ratings and follow up with interview questions about any items that seemed questionable, as recommended in the ABAS-II manual.

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Summary

CanFASD Northwest will soon embark on an extensive data collection exercise that will seek to further describe and understand the range of needs of persons with FASD in Canada’s Northwest. In anticipation of that exercise, CanFASD Northwest wanted to ensure that the data coming into the system would be useful in terms of moving the field forward. The idea of consulting with multi-disciplinary diagnostic teams on the psychometric tools they use emerged as a way of working toward a pan-Canadian approach to assessment of individuals with FASD.

This session was the first of two that will identify the tools that multi-disciplinary diagnostic teams will use to assess individuals with FASD. The task of doing so is an incredibly important one and will pave the way for a consistent pan-Canadian approach to diagnosis that in turn will have the potential to generate a very useful foundation of data to inform the FASD field.

A key discussion point that was made related to alcohol-related diagnoses. The group recommended that clinical teams use extreme caution when making a diagnosis based on ratings by others (not of the patient). An alcohol-related diagnosis requires identifying three significantly affected brain domains. The finding of three affected domains could potentially be made based on the ratings of a single informant. For example, a diagnosis might be made using ratings of executive function (rather than direct measures), ratings of adaptive behaviour (rather than interview), ratings of ADHD symptoms (rather than observations or direct measures), and ratings of social communication (rather than direct or observational measures). The concern is that a parent or teacher with a negative response bias could have an undue effect on the diagnostic outcome. Teams should always include direct measures in the assessment battery where they are available, and follow up with interviewing if ratings are questionable. The group mentioned that further discussion of this issue should be pursued at future meetings. They also expressed a desire to have a mechanism or process by which new tests or different tests could be suggested and evaluated.

Those who participated in the session demonstrated immense commitment to the task, a sincere willingness to provide leadership in FASD assessment and great enthusiasm for the work ahead. They expressed appreciation for the invitation to be involved in the deliberations and agreed to offer additional input to support the completion of the tasks.

CanFASD Northwest was extremely pleased with the outcomes of the exercise and is in the midst of planning for the second phase.

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Appendix A: Agenda

June 13 – Day One

8:15 Breakfast Provided

9:00 Welcome and Opening Remarks

Dr. Sterling Clarren

Jan Lutke

9:15 Introductions and Overview of the Meeting

Paula Stanghetta, Facilitator

9:45 Overview of Current Approaches to Psychometric Testing for FASD

Jan Lutke

Dr. Christine Lilley

Dr. Sandra Clarren

10:15 Response to Current Approaches - Group Discussion

10:45 Refreshments

10:45 Detailed Discussions and Consensus Building on Psychometric Tools

12:15 Lunch Provided

1:00 Small group work continued

2:15 Refreshments



4:30 Summary of day

4:45 Adjourn

June 14 - Day Two

7:45 Breakfast Provided

8:30 Review of Day One Accomplishments


11:45 Lunch Provided

1:00 Final small group session

2:30 Refreshments

2:45 Outstanding Issues

Next Steps

3:30 Adjourn

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Appendix B: Participant List

Prov. Name Organization

Julie Conry Asante Centre for Fetal Alcohol Syndrome

103 - 22356 McIntosh Avenue

Maple Ridge, BC V2X 3C1

Sandra Clarren CONSULTANT

Canada Northwest FASD Research Network

L408 – 4480 Oak Street

Vancouver, BC V6H 3V4

Sterling Clarren Canada Northwest FASD Research Network



Jeanine Harper Fraser Developmental Clinic

261 - 610 Sixth Street

New Westminster, BC V3L 3C2

Kim Kerns Department of Psychology, UVic

Jan Lutke Canada Northwest FASD Research Network



Christine Lilley Complex Developmental Behavioral Conditions (CDBC) Clinic

3644 Slocan Street

Vancouver, BC V5M 3E8

Christine Loock Complex Developmental Behavioral Conditions (CDBC) Clinic

3644 Slocan Street

Vancouver, BC V5M 3E8

Kelly Price CDBC Clinic, Queen Alexandra Centre for Children’s Health, Victoria, BC

BC

Tina Newman CDBC Clinic, Sunny Hill Health Centre for Children, Vancouver, BC

14

Ann Robson CDBC Clinic, Sunny Hill Health Centre for Children, Vancouver, BC

Aaron Lautzenhiser

CDBC Clinic, Sunny Hill Health Centre for Children, Vancouver, BC

Diane L. Russell CDBC Clinic, Nanaimo Child Development Centre, Nanainmo, BC

Krystina Tran Canada Northwest FASD Research Network



Shelley Bergman Renfrew Educational Services,

Calgary, AB

Carmen Rasmussen

Glenrose Rehabilitation Hospital

FASD Clinical Services, Edmonton, AB

Mary E. Lee Northwest Regional FASD Society

High Level, AB

Valerie Massey Canadian Diagnostic & Training Centre

Redwater, AB

Jacqueline Pei Glenrose Rehabilitation Hospital

FASD Clinical Services, Edmonton, AB

AB

Marty Mrazik Canadian Diagnostic & Training Centre

Redwater, AB and University of Alberta

Della Hunter Regina Child and Youth Services

Regina, SK

Mary Vandergoot Alvin Buckwood Child Development Program

Saskatoon, SK

SK

Heather Switzer Children’s Program, Wascana Rehabilitation

Regina, SK

Al Kircher Clinic for Alcohol & Drug Exposed Children (CADEC)

Child Development Clinic, Children’s Hospital

Winnipeg, MB

MB

Kent Somers CADEC

15

YK Leona Corniere Children & Youth FASD Diagnostic and Support Teams

C/o Child Development Centre, Whitehorse, YK

CDC Yukon Preschool Team

Sharon Davis CDC Team - School Age Team, Department of Education, Special Programs, PO Box 2703, Whitehorse, YK Y1A 2C6

Donna Jones DC Team - School Age Team, Department of Education, Special Programs, PO Box 2703, Whitehorse, YK Y1A 2C6

ON Paula Stanghetta (Facilitator)

Paula Stanghetta and Associates

Ottawa, ON

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Appendix C: Post-Session Psychometric Tools Matrix (consensus achieved) Age Groups (Years) Domain

4-6 6-16 16 (Adults)

WPPSI–III: Wechsler Preschool and Primary Scale of Intelligence, 3rd Edition (0-6)

Cognition

Alternate: DAS: Differential Ability Scales (2-17)

WISC -IV: Wechsler Intelligence Scale for Children, 4th Edition

WAIS–III: Wechsler Adult Intelligence Scale, 3rd Edition (16-89)

BBCS-R: Bracken Basic Concept Scale-Revised School Readiness Composite (3-6)

Math: WIAT–II: Wechsler Individual Achievement Test, 2nd Edition (4-85)

Reading: WIAT–II: Wechsler Individual Achievement Test (4-85)

Spelling: WIAT-II: Wechsler Individual Achievement Test (4-85)

Written Expression (story only): TOWL–3: Test of Written Language, 3rd Edition (7-17)

WRAT–4: Wide Range Achievement Test, 4th Edition (5-75)

Academic

Achievement

Alternate: K-SEALS: Kaufman Survey of Early Academic and Language Skills

Alternate: WJ-R to WJ III: Woodcock-Johnson Tests of Achievement (2-90)

Alternate: WJ-R to WJ III: Woodcock-Johnson Tests of Achievement (2-90)

WRAML2: Wide Range Assessment of Memory and Learning, Second Edition (5-90)

WRAML 1-2: Wide Range Assessment of Memory and Learning, first and Second Editions (5-6 and 6-90)

Memory NEPSY Learning and Memory ( 4)

WRAML2: Wide Range Assessment of Memory and Learning, 2nd Edition (5-90)

Supplementary:

CAVLT: Children’s Auditory Verbal Learning Test (6-17) or CVLT-C: California Verbal Learning Test-Children’s Version (5-16).

Use either; not to be used together

Supplementary:

RAVLT: Rey Auditory Verbal Learning Test (6 to 89) or CVLT-II: California Verbal Learning Test, Second Edition (16-89). Use either; not to be used together

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Executive Functioning

and Abstract

Reasoning

BRIEF-P: Behaviour Inventory of Executive Function, Preschool Version (4-5)

NEPSY: Attention and Executive Functioning (4-6)

NEPSY II, Second Edition for 6

BRIEF: Behavior Rating Inventory of Executive Function (5 to 18)

RCFT: Rey Complex Figure Test (6 to 89)

WISC-IV Digit Span Backwards and Letter-Number Sequencing

D-KEFS: Delis-Kaplan Executive Function System ( 8). Subtests: Verbal Fluency, Design Fluency, Color-Word Interference, Sorting

Children’s Color Trails Test (8-16)

WRAML-2 Verbal and Symbolic Working Memory (9-89)




DKEFS: Delis-Kaplan Executive Function System ( 8). Subtests: Verbal Fluency, Design Fluency, Color-Word Interference, Sorting

Color Trails Test (18-89)


Attention and

Hyperactivity

BASC–2: Behavior Assessment System for Children, Second Edition (2-21)

BASC-2: Behavior Assessment System for Children, Second Edition (2-21)

BASC-2: Behavior Assessment System for Children, Second Edition (2-21)

Adaptive Behavior ABAS-II: Adaptive Behavior Assessment System, Second Edition (0-89)

VABS-II: Vineland Adaptive Behavior Scale, Second Edition (0-90)

Choice of measure depends on situation:

Limitation of time

Parent literacy

Age of child

Need for an interview rather than a questionnaire

ABAS: Adaptive Behavior Assessment System (0-89)

VABS: Vineland Adaptive Behavior Scale (0-90)


Limitation of time

Parent literacy

Age of child



VABS: Vineland Adaptive Behavior Scale (0-90)


Limitation of time

Parent literacy

Age of child


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Appendix 4: Use of Psychometric Tools Reaching Consensus – Phase 2 Meeting

Psychometric Tools Used for Evaluating Individuals with FASD: Reaching Consensus – Phase 2 Meeting

Canada Northwest FASD Research Network: Vancouver, British Columbia September 18-19, 2007

Table of Contents


Introduction.............................................................. 2

Session Purpose and Preparation ............................. 2

Session Process......................................................... 3

The Individual… .........................................................................4

Discussion ................................................................ 5

Psychometric Tools for Neurological Signs (Sensory Motor) — Occupational Therapists.........................................5

Psychometric Tools for Communication: Receptive and Expressive – Speech—Language Pathologists (S-LP)..........8

Additional Notes .......................................................................11 Physician-Administered Measures..........................................12

Summary..................................................................14

Appendix A: Agenda................................................16

Appendix B: Participant List ...................................17

Appendix C: Post-Session Psychometric Tools Matrix — Phase 2 (consensus achieved).................22

Appendix D: Phase 1 Psychometric Tools Matrix — Phase 1 (consensus achieved)..................................25

2

Introduction

The Canada Northwest FASD Research Network (CanFASD Northwest) has been collaborating with diagnostic clinics to support their efforts in conducting comprehensive assessments for individuals with FASD. During several months of 2007, CanFASD Northwest focused on the approaches and tools that clinics were using to assess individuals with FASD. This exploration led to the realization that there was little consistency among clinics regarding the psychometric tools that were used by multi-disciplinary teams in the assessment. In an effort to create a common and consistent pan-Canadian approach for assessing individuals with FASD, CanFASD Northwest decided to invest resources in a process that would begin to address this inconsistency.

CanFASD Northwest devised a two-phase process to bring together representatives of all disciplines working within diagnostic clinics who use a multi-disciplinary approach. The first phase involved psychologists from each of the clinics who would come together for two days to achieve consensus on the psychometric tools to be use in diagnosis. The second phase would involve all others who form a multi-disciplinary diagnostic team (such as Speech-Language Pathologists, Occupational Therapists, and Pediatricians) and include a small representative group from the first phase to build continuity. During each phase, the groups would review current approaches and tools for their respective disciplines and then work towards consensus on the most effective tools to use in assessment.

CanFASD Northwest hosted both sessions in Vancouver, BC. The first session was held on June 13 and 14, 2007. The second session occurred on September 18 and 19, 2007. This report chronicles the process and outcomes of the second session.

Session Purpose and Preparation

The purpose of the session was to bring together Speech and Language Pathologists (S-LPs), Occupational Therapists (OTs) and Pediatricians (who are currently assessing individuals) to reach consensus on which tools would be used consistently across Canadian Northwest diagnostic clinics for their disciplines. This would complete the work begun in Phase 1.

Approximately 45 individuals participated in the session representing 21 clinics from five provinces and territories. Five participants from the Phase 1 meetings were invited to participate also, to provide continuity to the overall process. Staff from the Canada Northwest Research Network attended as well.

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In advance of the session, a research assistant was hired to collect information on the tools currently being used by clinics across Canada’s Northwest. A survey was distributed to all clinics, asking them to complete and return it to CanFASD Northwest. The information was collated into a table and included tools used in the following 11 domains, or areas of assessment:

1. Cognition

2. Academic Achievement

3. Memory

4. Executive Function and Abstract Reasoning

5. ADHD (and attention more generally)

6. Adaptive Behaviour, Social Skills and Social Communication

7. Neurological Signs (sensory motor)

8. Communication: Receptive and Expressive

9. Supplementary Measures (Emotional Status)

10. Pediatrician Administered Measures

11. Others

The first six categories were the focus of the first session. The second session focused on the remaining domains: Neurological signs, Communication, Supplementary Measures, Pediatrician Administered Measures and Others.

It was evident from the information collected that, while there was some consistency in tools used among clinics, for the most part there was tremendous variability in the instruments used. Coming to consensus was seen as an important and timely exercise.

Session Process

The session began with opening remarks designed to provide background on CanFASD Northwest, set the context for the event, emphasize the importance of the task and ensure clarity on the expectations and outcomes of the two-day meeting. This was followed by a brief presentation and large group discussion that focused on the current picture of assessment. An explanation of the pre-session survey of clinics was offered

4

along with a review of the matrix of tools, which participants reviewed prior to the session. Participants received a brief overview of the Phase 1 outcomes and together reviewed the Matrix that was produced in that meeting.

The balance of the session consisted of small group discussions, then large group consensus building to identify the psychometric tools the group would agree to use. The session ended with a discussion about next steps and the identification of a small group of individuals who were interested in reviewing the session report and ensuring follow-up occurred.

In setting the context, participants were informed that CanFASD Northwest is in the process of preparing to collect consistent and cohesive data that could be translated to inform decision-making and policy. The outcomes of this session would assist in creating a system where such data could be collected. Recognizing that data was potentially very political and sensitive, the work of this group was seen as extremely important in paving the way ahead.

Participants were advised that in working towards consensus on the tools, they should recommend tools that would be appropriate for a typically evaluated person, described as falling within the these parameters:

The Individual…

Is between 4 and 18 years of age (i.e. school-aged children)

Has an IQ between 70 and 100

Speaks English adequately (“fluently” was initially in the criteria, but the participants agreed to change it to “adequately”)

Has no sensory deficits

Has experience in life (i.e. it is valid to use tests for the general population)

When assessing individuals outside of these parameters, clinicians might be required to make modifications to the assessment process such that the recommendations in this report would not apply to those individuals. These modifications were to be based on the clinical judgment of the assessment team and would not be addressed within this report.

Participants were encouraged not to hold back recommendations on tools, if lack of money was an issue, CanFASD Northwest would address this outside of the meeting.

The group was also advised that no one was mandating that they use the tools identified through this process. It was hoped that participants would share the outcomes of this

5

meeting with their teams, discuss the merits of the tools identified and consider using the tools in an effort to work towards consistency and, eventually, data collection.

Participants were reminded that the results of this meeting would bring all those working in diagnosis a step closer to being able to tell a story to the government about FASD and ultimately to support patients, families and communities.

Discussion

While the number of participants at session 2 was significantly larger than at session 1, there were fewer domains that required discussion. Unlike the first meeting where all participants were part of the same discipline, this session included individuals from three separate disciplines. This made the process more challenging since the small group discussions meant that between 3-5 simultaneous small group discussions were going on in the same room.

The core task for each discussion was to consider the existing matrix of tools and recommend one (or possibly more) psychometric tools for use within each domain. Participants were divided into five smaller groups (two each for the Speech and Language Pathologists (S-LPs) and Occupational Therapists (OTs), and one for the Pediatricians) and assigned to examine, discuss and reach consensus with the evaluation domains that were done within their clinical work in FASD assessment. All groups had an opportunity to present their emerging thoughts about the tools part way through the process so that clarification could be made where necessary, questions could be asked and each group could build other perspectives into their particular discussion.

Groups were instructed to identify tools in three age categories: ages 4-6, 6-16, and 16-18. Tools for each domain, by age group can be found in Appendices at the end of this document.

Please Note: The authors of this document assume a certain level of knowledge with regard to the variety of tools discussed from here forward. As such, the tools discussed are most often listed using the acronym form. For the full names, please refer to the Psychometric Tools Matrix in Appendix.

Psychometric Tools for Neurological Signs (Sensory Motor) — Occupational Therapists

The scan of clinics identified 28 different tools that were being used to assess neurological signs. Four tests were reportedly used by between 6 and 8 clinics (Sensory Profile, NEPSY, Visuospatial Functions, NEPSY Sensorimotor Functions and Beery VMI: Beery-Buktenica Developmental Test of Visual-Motor Integration). Each of the

6

two OT groups began their discussion by determining whether any other tests should be added and considered during the discussion. None were identified.

As a result of the two small group review of tools, the comparison of results between the groups and a final large group discussion, the OTs recommended that the domain be divided into two categories: Motor and Sensory.

The agreed-upon tool for the Motor category is:

For Ages 4-11

The Peabody Developmental Motor Scales–Second Edition (PDMS-2) was selected as the most age appropriate motor-based assessment providing information on visual motor integration, manual dexterity and gross motor skills.

Rationale: In general, the group felt that the Miller Function and Participation Scales (M-FUN) showed promise but was a relatively new assessment and many of the OTs present had reviewed the assessment but had not yet used it enough to know whether it would be useful in this population. Those who had reviewed the M-FUN felt that the parent and preschool questionnaires part of the assessment could also provide valuable supplemental information about the child’s functioning in home and preschool environments.

For Ages 5 to 18

The Bruininks-Oseretsky Test of Motor Proficiency–Second Edition (BOT-2) (full form) was selected as the most appropriate overall motor assessment providing information on both fine and gross motor skills. The short form of the BOT-2 was also considered an acceptable option for those situations where time constraints or the client’s attention span might limit the amount of time allotted to complete the assessment.

Rationale: Discussion revealed that more of the OTs present had experience with the BOT-2 and felt that it provided accurate and precise information re: motor skills. However, some OTs felt that due to time constraints for doing assessments that the BOT-2 would take too long. It was then recommended that the BOT-2 Short Form could be used. Another concern expressed about the BOT-2 was the space and set-up requirements. Some of the OTs who are community-based are doing assessments in less than ideal settings (for example, church basements). However overall the BOT-2 was felt to be the best tool.

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Recommendation for Supplementary Tool: The Quick Neurological Screening Test-Second Edition (QNST-II) was suggested as a supplementary test to determine subtle neurological signs that may be affected as a result of pre-natal alcohol exposure.

The M-FUN was discussed as a possible tool for further consideration for this population in the age range of 4-7 years. This was a relatively new assessment and many of the OTs present had reviewed the assessment but had not yet used it enough to know whether it would be useful in this population. Those who had reviewed the M-FUN felt that the parent and preschool questionnaires part of the assessment could also provide valuable supplemental information about the child’s functioning in home and pre-school environments.

Rationale: The group decided that the PDMS-2 was the most widely used and easiest to administer assessment for four-year-olds. However, the group also recognized that this assessment might not be ideal for FASD assessments. Therefore, the group chose to include investigations of the M-FUN as part of the recommended tools. As the M-FUN is a relatively new assessment tool, not enough members of the group were familiar enough to support using this tool. The QNST-II was added as a supplemental tool on request of the occupational therapists working more with adolescents and by request of the physicians in the group. The physicians expressed that the QNST-II was helpful for their assessment when occupational therapy was not available. With both recommended assessment tools, the group chose to support use of the full scales. This would provide more comprehensive information and could be done in partnership with a physical therapist when that service was available.

There was much discussion regarding the use of the Movement Assessment Battery for Children (Movement ABC) but it appeared that more of those present had experience with the BOT-2 and felt that the BOT-2 provided more accurate and precise information for assessment of this domain. Therefore, it was not chosen due to its lack of sensitivity.

The agreed upon tools for the Sensory category were:

For the 4 year old group

Short Sensory Profile (SSP)

The Sensory Profile Caregiver Questionnaire could also be used for supplementary information

For the 5-18 year old group

Short Sensory Profile (ages 5-10 year old)

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Adult Adolescent Self-Questionnaire (ages 11/12-18 years), with the option of having a caregiver assist the adolescent when filling out the questionnaire

Rationale: The SSP was developed through utilizing the most sensitive questions from the longer version of the Sensory Profile. Therefore, it was felt that the Short Form was more accurate in determining sensory processing differences. Additionally, the SSP provides a total score which is not available with the longer version. Finally, the SSP had been found to be more practical to use because it takes less time and easier to review with an individual who may have low literacy levels.

The group also recommended adding visual perception testing as supplementary testing under the Executive Function and Abstract Reasoning domain, Column 4 of the Matrix I, as a sub domain. As this testing would be completed as a supplement to neuropsychological testing, the recommendation would be to complete the Test of Visual Perceptual Skills – Third Edition (TVP-3), as this provided the most detailed information regarding visual perceptual skills. On this point, one participant noted that the purpose of this addition was not to suggest that visual perception was a core aspect of executive functioning or abstract reasoning, but rather visual perception could be important in addressing potential confounders in the interpretation of the Rey Complex Figure Test (RCFT), which had been identified as a test of Executive Functioning. Low scores on tests of Visual Perception would not, therefore, be sufficient to suggest a deficit in Executive Functioning, but might account for low scores on the RCFT which might otherwise have been attributed to executive dysfunction.

Another recommendation was to rename this domain as “Motor-Sensory” Domain. The rationale being that the OTs felt that they were more specifically assessing motor-sensory skills than neurological signs. The term soft neurological signs has not well defined and this group thought that by calling the domain “motor-sensory skills “, the title would more accurately reflect what was actually being assessed.

A final recommendation was that if standardized assessment reflects delay in either the sensory or the motor sub-domains for this category, it was to be considered an affected domain. Many OTs expressed that while sensory processing tends to be affected, motor may not be. Therefore, a child would not need to have deficits in both sensory and motor skills in order to be considered to have an affected domain.

Psychometric Tools for Communication: Receptive and Expressive – Speech—Language Pathologists (S-LP)

The S-LPs were divided into two groups for ease of discussion and were asked to recommend the best tool for each age group, divided into the following: 4-6 age group, 6-16 age group, and 16 and up age group. The two groups presented a summary of their

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discussion and then decisions were reached on final recommendations. The tests, followed by a brief narrative on the rationale have been presented below. The group suggested the domain be divided into sub-domains of: core language, narrative language, expressive language and receptive language.

For the 4-6 Year Age Group

Core language: CELF-P2

Narrative language: Recommended test is Bus Story

Expressive language: PLAI-II

Receptive language: CELFP-2 Pragmatics checklist

Rationale: The CELF-P2 was chosen because the PLS-4 overestimates language ability in this population. The CELF-P2 should be used for 5-year old children unless clinical judgement suggests otherwise. Regarding narrative language vs. social language and the overlap – sometimes testing oral narration is important.

Regarding the Renfrew Bus Story, research shows that the UK norms are a better fit with Canadian populations. Therefore, there was consensus to use the UK version if these could be easily obtained and distributed.

For measuring early verbal reasoning skills, it was noted that the first subtest does not in fact indicate verbal reasoning, while the three others do assess some early verbal reasoning skills.

It was mentioned that the Pragmatics Profile of CELF-P2 and CELF-4 are not ideal, but they are currently the best that exist. It is recommended that the caregiver fill the checklist out and additionally, the teacher if clinically indicated.

For the 6-11 Year Age Group

CELF-4,

TNL

TOPS-2Elementary

Pragmatics Profile

The participants identified an additional level of testing depending upon how well the child performs on the above and that the use of the additional tests would be based on clinical judgment. For those who were lower function and struggle early on, the CELF-4 subtests can be used to complete the receptive and expressive assessment. For those who were higher functioning, the CASL (for inferencing and non-literal language) and

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the Coggins Mental State Reasoning can be used. The “Frog Story” was also strongly recommended as a supplemental here.

Rationale and Notes: Participants noted that it is important to get receptive and expressive indices of CELF-4 but not necessarily the language memory dimensions because this would be covered in the Memory domain. While the CASL was another optional test, the core language, receptive and expressive dimensions were weak and hence not recommended.

The TNL was chosen over the Renfrew Bus Story for this age group because of the range of tasks and decrease of visual support. The norms are not very sensitive, but the tool gives good clinical information.

There was a discussion around vocabulary assessment that served to highlight that it is not important to indicate brain dysfunction, but it is important clinically to show discrepancies. While this area does not make the critical “must do” list, it is important to continue to consider it.

The TOPS-E is an important part of the battery for this age group and that it takes a much shorter amount of time to administer and score than other tools. Participants remarked that the TOPS did not evaluate the same abilities of the Test of Language Comprehension (TLC) or subtest of the CASL.

A point was made about time constraints faced for doing assessments and this aspect was factored into the discussion on selection of tools.

Regarding the Coggins Test – it was noted that the results were often highly clinically useful but not normed. It was suggested that there might be a need to additional training for SLPs who were not familiar with the test since it was not often used in a more general clinical setting. Furthermore, the participants agreed that they should advocate for support of Coggins materials and for the development of norms. Some additional consultation needed to occur among participants in order to decide how to gather data from Coggins materials in order for it to be useful for research purposes. The Coggins could be used to identify higher levels of dysfunction not captured on the TOPS. A final problem with the Coggins was identified, as many did not know how to use the test to obtain mental state reasoning score. Finally, participants mentioned that it would be worthwhile to explore the possibility of Coggins materials becoming the standard. However, until that happens, it should be placed on the “supplementary list” of tools.

At the present time, the Pragmatic Checklist was the best tool available.

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In summary, participants felt that “clinical judgement” remained an important aspect of assessment and use of tools. It was recognized that choosing a specific battery of tests for every client was a challenge.

For the 12+ Age Group

CELF-4 for core language, receptive and expressive

TOPS – Adolescent or TOPS Elementary, Pragmatics Profile of CELF-4 and Word Definitions of CELF-4 for 12 year olds

CASL for inferred and non-literal language

Rationale and Notes: Participants noted that CELF-4 for core/receptive/expressive did not include the Word Definitions subtest for 12 years olds, so it was to be added for this age group.

A supplemental subtest that was considered helpful was the TOWK for multiple contexts. There was a suggestion to review at some time for possible inclusion with the core tests listed above. The Frog Story – Mental State Reasoning was offered as a supplemental in this category as well.

The group mentioned that Oral Motor/Apraxia/Articulation/Phenology are all supplemental if indicated. Their results are counted in “Hard and Soft” Neurological Signs domain, especially oral motor difficulties and/or apraxia.

Additional Notes

The group proposed (but did not reach consensus on) the following as the complete set of (re-named) domains that SLPs would have responsibility for:

Hard and Soft Neurological Signs (all supplemental)

Communication – Core Language; Narrative Language

Executive Functioning and Abstract Reasoning – Verbal Reasoning

Adaptive Functioning and Social Communication – Pragmatic Language

There was a need to consult with psychologists in the final analysis and remain flexible depending upon results that the entire team brings to the discussion of any client.

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Physician-Administered Measures

Six pediatricians from across the Northwest participated in this meeting. Their task was to discuss, identify and come to consensus on a battery of tools that any pediatrician working in a multi-disciplinary team would use within an FASD clinic.

The discussion for this group addressed not only potential tools, but began with a very broad discussion about the role of the pediatrician and identification of specific responsibilities and tasks that the individual brings to the FASD team. At the time of the session, there were no standard battery of tests designed for use by Pediatricians. The group provided a list of the various tasks and associated median timelines that were part of pediatrician role in FASD diagnosis. These included:

Chart Review (.5 to 1 hour after intake)

Physical examination of child (up to .5 hour)

Caregiver interview with social worker (1 hour)

Mental Status Examination and academic (minimum 1-hour)

Team conference (1.5 hours)

Family meeting (1 hour)

Community team (1.5 hours)

Conferencing/feedback with adolescent (.5 hour)

Report writing (.5 hour)

Following the Vancouver meeting, the six pediatricians conferred as a group to discuss this issue further. They drafted a document that described in detail the physician role, goals for the medical examination and specific tasks and tools recommended for the achievement of goals.

The full text of their report is included below.

“FASD is a medical diagnosis based on analysis of physical factors and key functional assessments by a multidisciplinary team. Thus the physician has an important role. The physician on the FASD Diagnostic Team needs to have training in child and youth development, mental health issues, neurological and genetic disorders and family function. To work with an older teen and adult FASD Diagnostic Team, knowledge of substance abuse and secondary mental health disorders is important.

Goals of the medical evaluation are to:

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Identify all the possible medical and environmental etiological factors

Participate in the differential diagnosis with the team

Confirm the final diagnosis

Identify co-morbidities and concurrent conditions

Provide a health assessment, additional testing and referrals to sub-specialties as indicated

Make recommendations with the team, with medications under the discretion of the physician

Outline of tasks and tools:

History analysis: consider all risk factors including familial/genetic patterns, prenatal and perinatal factors, postnatal psychosocial and physical impact that can be contributing to the individual’s functional difficulties. The tool for this task is methodical tracking of documents and interview of current care provider. (Details of the maternal history including pre-pregnancy and pregnancy health, education level, mental health, relationships, substance abuse and treatment programs for addictions are critical but not always available for a child not in care of the birth mother.) Information from Child Welfare records may be helpful but with caution as it is often 3rd or 4th party information and there may be secondary gain by the informants.

Current function of the child and how this has changed over time is obtained by past and present documentation from school and caregivers. The tool could be the Caregiver Interview from the DPN Manual (elaborated on by many of the diagnostic clinics). This is often co-conducted by the Physician and Social Worker and leads to the evaluation of the “day in the life of the child” from the caregiver’s perspective, what strategies have been put on place, the family dynamics and the caregivers knowledge of FASD, advocacy skills and commitment to the child.

Health determinants that impact development and function: Past and present history of seizures, tics, obstructive sleep apnea, low iron, diet restrictions, sleep pattern, chronic wheezing and middle ear dysfunction, surgeries, accidents, hospitalizations, testing such as EEG and MRI, medications (which ones, how long, dose, targeted behavior, responses, side effects), general system review.

Physical exam including growth measurements, neurological exam noting soft neurological signs, movement disorders such as tics, dysmorphology, sensory issues, general physical examination looking for Alcohol Related Birth Defects and current health issues, including vision and hearing. It is key to do

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differential diagnosis of other genetic syndromes with dysmorphic facies, other causes for growth deficiency, other reasons for neurological abnormality that may require neuroimaging.

Mental status: observation and interview of client looking at attention, hyperactivity, impulsivity, communication pattern such as overly talkative and tangential, anxiety, depression, mood, attachment including personal boundaries, awareness of impact of behavior on others, suicidal tendencies. Differential diagnosis and co-morbidities and secondary disabilities of a mental health nature also need to be considered. Tools for this area may include BASC, Connors, Stonybrooke Childhood Symptom Inventory, etc. often done in conjunction with the team Psychologist. The Physician has the opportunity to “play” with the child without requiring the child to do a test and this may be closer to “real life”.

Formulation of diagnosis: participate in the integration and collaboration of information with the rest of the team. Other team members will have information on motor function, behavior, mood, and communication as part of their standardized assessments as well as their qualitative observations during the assessment. The task is to identify sufficient evidence for organic brain dysfunction contributing to the individual’s difficulties.

Development of intervention strategies and support systems after diagnosis. This needs to be strength-based and across all settings of home, school and community and focused on child and caregiver. Knowledge of availability of resources in the community is key. All team members participate in this process. The Physician needs to make the referrals for medical tests and sub-specialists. The Physician presents medications to the family with discussion of benefits and risks. If prescribed follow up needs to be planned.

Longitudinal follow up is important as the child’s function may change with age and different societal expectations and care giving situations may change. In the current Health Care system, the Physician is looked on as the point of contact when crisis arrive. In best practice, anticipatory follow up would be planned.”

Summary

CanFASD Northwest will soon be embarking on an extensive data collection exercise that will seek to further describe and understand the picture of FASD in Canada’s Northwest. In anticipation of that exercise, CanFASD Northwest wanted to ensure that the data coming into the system can be useful in terms of moving the field forward. The idea of consulting with multi-disciplinary diagnostic teams on the psychometric tools

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they use emerged as a way of working toward a pan-Canadian approach to assessment of individuals with FASD.

This session was the second of two designed to identify the tools that multi-disciplinary diagnostic teams will use to assess individuals with FASD. The task was seen as central to paving the way for a consistent pan-Canadian approach to diagnosis that in turn would have the potential to generate a very useful foundation of data to inform the FASD field. This particular meeting was a very complex process given our number of participants and the mix of disciplines in the room. It made for some lively discussion, but also some distraction as a result of multiple discussions occurring simultaneously.

Nevertheless, those who participated in the session demonstrated immense commitment to the task, a sincere willingness to provide leadership in FASD assessment and great enthusiasm for the work ahead. They expressed appreciation for the invitation to be involved in the deliberations and agreed to offer additional input to support the completion of the tasks. Several participants offered to form a small sub-committee to ensure adequate and timely follow-up.

CanFASD Northwest was extremely pleased with the outcomes of the exercise and is in the midst of merging the outcomes of the two meetings and devising critical next steps.

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Appendix A: Agenda

September 17 – Day One

8:15 Breakfast

9:00 Welcome and Opening Remarks,

Dr. Sterling Clarren

Jan Lutke

9:15 Introductions and Overview of the Meeting

Paula Stanghetta, Facilitator

9:45 Phase 1 Meeting Outcomes from June 2007

Jan Lutke

10:00 Overview of Current Approaches to Psychometric Testing for FASD

Dr. Christine Lilley

10:30 Refreshments

10:45 Response to Current Approaches – Group Discussion

11:45 Lunch

12:45 Detailed Discussions and Consensus Building on Psychometric Tools by Domain Simultaneous Small Group Work

2:15 Refreshments

2:30 Large Group Discussion

4:00 Summary of day

4:30 Adjourn

September 19, 2007 - Day Two

7:45 Breakfast

8:30 Review of Day One Accomplishments

8:45 Simultaneous Small group work Continued

10:00 Refreshments

10:15 Large Group Discussion re: Pediatrician Domain Results

11:30 Lunch

12:30 Practical Considerations for Moving Forward: Training, Resources and Timing

1:45 Refreshments

2:00 Outstanding Issues

Next Steps

3:00 Adjourn

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Appendix B: Participant List

Prov Name Organization

BC Dr. Chris Loock CDBC Clinic

Sunny Hill Health Centre for Children

Vancouver, BC

Dr. Barb Fitzgerald

CDBC Clinic


Vancouver, BC

Dr. Jonathan Down

CDBC Clinic

Queen Alexandra Centre for Children’s Health

Vancouver Island Health Authority

Victoria, BC

Ali Henderson Okanagan Speech and Language

Kelowna, BC

Cheryl Headey CDBC Clinic CDC

Nanaimo Child Development Centre

Nanaimo, BC

Jillian Gordon CDBC Clinic CDC

Nanaimo Child Development Centre

Nanaimo, BC

Christine Lilley CDBC Clinic


Vancouver, BC

Alexis Davis CDBC Clinic


Vancouver, BC

Janice Forsey CDBC Clinic


Vancouver, BC

Dr. Kelly Price CDBC Clinic



Victoria, BC

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Adelle Rama CDBC Clinic



Victoria, BC

Ramona Brar Fraser Development Clinic

New Westminster, BC

Laurie Cole CDBC Clinic



Victoria, BC

Kristal Bodaly The Asante Centre for Fetal Alcohol Syndrome

Maple Ridge, BC

Carol Woodworth

The Asante Centre for Fetal Alcohol Syndrome

Maple Ridge, BC

AB Brie Saunderson Peace Country Health

Peace River, AB and

Chinook Health Region

Lethbridge, AB

Mitch Cedar Peace Region FASD Diagnostic Services

Peace River, AB

Maribeth Tik Northern Lights Health Region

Northwest Health Centre

High Level, AB

Lynne Abele-Webster

Glenrose Rehabilitation Hospital

Edmonton, AB

Jacqueline Pei Glenrose Rehabilitation Hospital

Edmonton, AB

Connie Alton Glenrose Rehabilitation Hospital

Edmonton, AB

Gail Andrew Glenrose Rehabilitation Hospital

Edmonton, AB

Sharon Winik Aspen Regional Health Authority

Cold Lake Community Health Services

Cold Lake, AB

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Vanna Thiel Aspen Regional Health Authority

Cold Lake Community Health Services

Cold Lake, AB

Ben Gibbard Alberta Children’s Hospital

Calgary, AB

Pearl Park Alberta Children’s Hospital

Calgary, AB

Shaffina Mohamed

Alberta Chidlren’s Hospital

Calgary, AB

Terri Bainbridge Children's Health & Developmental Services

Palliser Health Region

Regional FASD Program, A Division of Bridges Family Programs

Medicine Hat, AB

Brad Irvine Children's Health & Developmental Services

Palliser Health Region

Regional FASD Program, A Division of Bridges Family Programs

Medicine Hat, AB

Dr. Valerie Massey

Canadian Diagnostic and Training Centre

Redwater, AB

Melanie Bergmann

Renfrew Educational Services

Calgary, AB

Leah Fitness Loiselle

Renfrew Educational Services

Calgary, AB

SK Rae Lynn Lang Chidren’s Program

Wascana Rehabilitation Centre

Regina, SK

Donna Jackson Chidren’s Program

Wascana Rehabilitation Centre

Regina, SK

Carol Lahey-Wiggs

Alvin Buckwood Child Development Program at Kinsmen Children’s Centre

Saskatoon, SK

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Cynthia Bojkovsky

Alvin Buckwood Child Development Program at Kinsmen Children’s Centre

Saskatoon, SK

Della Hunter Cognitive Disabilities Diagnostic Support

Regina Child & Youth Services

Regina, SK

Crystal Day Cognitive Disabilities Diagnostic Support

Regina Child & Youth Services

Regina, SK

Karin Heaney Child & Youth Development Clinic

Mental Health

Prince Albert, SK

MB Dorothy Schwab Clinic for Alcohol and Drug Exposed Children

Children’s Hospital of Winnipeg

Winnipeg, MB

Dr. Ana C. Hanlon-Dearman

Clinic for Alcohol and Drug Exposed Children


Winnipeg, MB

Shelley Proven Clinic for Alcohol and Drug Exposed Children


Winnipeg, MB

Brenda Fjeldsted Clinic for Alcohol and Drug Exposed Children


Winnipeg, MB

YK Andrea Taeger Children and Youth FASD Diagnostic and Support Teams

CDC Team: Birth to 5 years

c/o Child Development Centre

Whitehorse, YK

Rachel Moser Children and Youth FASD Diagnostic and Support Teams

CDC Team: Birth to 5 years

c/o Child Development Centre

Whitehorse, YK

Pauline Craig Children and Youth FASD Diagnostic and Support Teams

Yukon Dept. of Education, Special Programs: 5 to 18

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years

Wendy Kitchen Children and Youth FASD Diagnostic and Support Teams

Yukon Dept. of Education, Special Programs: 5 to 18 years

ON Paula Stanghetta Paula Stanghetta and Associates Inc.

69 Trailview Drive

Kitchener, ON N2N 1P7

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Appendix C: Post-Session Psychometric Tools Matrix — Phase 2 (consensus achieved) Age Groups (Years) Domains

4-6 6-16 16 (Adults)

Motor: Peabody Developmental Motor Scales – 2nd Edition (PDMS-2) for ages 4-11

Sensory: Short Sensory Profile (SSP) for 4 year olds

Motor: Peabody Developmental Motor Scales – 2nd Edition (PDMS-2) for ages 4-11 and Bruininks-Oseresky Test of Motor Proficiency – 2nd Edition (BOT-2) (full form) for ages 5-18

Sensory: Short Sensory Profile (SSP) for ages 5-10 and Adult Adolescent Self – Questionnaire, ages 11/12 – 18, with option of having caregiver assist adolescent filling out questionnaire

Supplementary for Sensory: Sensory Profile Caregiver Questionnaire for 4 year olds

Supplementary for Motor: Quick Neurological Screening Test (QNST) for ages 5-18

Motor: Bruininks-Oseresky Test of Motor Proficiency – 2nd Edition (BOT-2) (full form) for ages 5-18

Sensory: Adolescent/Adult Sensory Profile (SP) and Adult Adolescent Self –

Questionnaire, ages 11/12 – 18, with option of having caregiver assist adolescent filling out questionnaire

Neurological Signs

(Sensory Motor) for

Occupational

Therapists

Consensus Recommendations

Dividing the Domain into two sub domains, Motor and Sensory

Adding Visual Perceptive Testing as supplementary testing under the Executive Function and Abstract Reasoning Domain, Column 4 of Matrix I, as a sub domain

Agreeing that if standardized assessment reflects delay in either the sensory or the motor sub-domains, it is considered an affected domain naming Executive Function and Abstract Reasoning Domain as Sensory Domain

Proposed Recommendations

Investigating Miller Function and Participation Scales (M-FUN) as part of the recommended tool for ages 4-7

Renaming the Domain as Motor – Sensory Domain

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CL: Clinical Evaluation of Language Fundamentals – 4th Edition (CELF-4)

NL: Test of Problem Solving – Adolescent (TOPS-A), Pragmatics Profile of CELF-4

EL: Clinical Evaluation of Language Fundamentals – 4th Edition (CELF-4)

RL: Clinical Evaluation of Language Fundamentals – 4th Edition (CELF-4)

Note: It was suggested possible inclusion of other tests (to be reviewed) to core tests in the future

Core Language (CL): Clinical Evaluation of Language Fundamentals – Preschool 2nd Edition (CELF-P2)

Narrative Language (NL): Renfrew Bus Story

Expressive Language (EL): Preschool Language Assessment Inventory – 2nd Edition (PLAI-2)

Receptive Language (RL): Clinical Evaluation of Language Fundamentals – Preschool 2nd Edition (CELF-P2) Pragmatic Checklist

Note: for early verbal reasoning skills, the first subtest does not indicate verbal reasoning, whereas the three subsequent ones assess some early verbal reasoning skills

CL recommended tests are:

Clinical Evaluation of Language Fundamentals – 4th Edition (CELF-4) and Word Definitions of CELF-4 for 12 year olds

Test of Narrative Language (TNL)

Test of Problem Solving – Elementary (TOPS-E) 2nd Edition

Pragmatics Profile

If child does poorly on above tests, use Word Definitions of CELF-4 to complete EL and RL.

To assess higher level of functioning, use Comprehensive Assessment of Spoken Language (CASL) for inference and non-literal language. Supplementary sub test is the Frog Story – Coggins Mental State Reasoning to complete EL and RL.

Supplementary sub test: Test of Word Knowledge (TOWK) for multiple contexts.

Possible Supplementary sub test: Frog Story – Mental State Reasoning

Communication:

Receptive and

Expressive for Speech

and Language

Pathologists

Consensus Recommendation

Dividing the Domain into 4 sub domains, Core Language, Narrative Language, Expressive Language, and Receptive Language

Proposed Recommendations:

Renaming the complete set of domains that fall under the SLPs’ responsibility as follows

Hard and Soft Neurological Signs (all supplemental)

Communication – CL; NL

Executive Functioning and Abstract Reasoning – Verbal Reasoning

Adaptive Functioning and Social Communication – Pragmatic Language

Consulting with Psychologists in the final analysis of the above tests

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Physician-

Administered

Measures

Overview of timelines involving Pediatricians as part of the FASD assessment is:

Chart review (0.5 to 1.0 hour after intake)

Physical exam of child (up to 0.5 hour)

Caregiver interview with Social Worker (1.0 hour)

Mental status exam and academic (minimum 1.0 hour)

Team conference (1.5 hours)

Family meeting (1.0 hour)

Community team (1.5 hours)

Conferencing/feedback with adolescent (0.5 hour)

Report writing (0.5 hour)

The total time commitment of a Pediatrician as part of the FASD assessment is 8.0 hours on average.

At the present time, there is no standard battery of tests for Pediatricians. Outline of tasks and tools offered are:

History analysis: Information is collected via methodical tracking of documents and interview of current caregiver

Current function of child: Information is collected via Caregiver Interview, (a day in the life of the child) from DPN manuel, co-conducted by Physician and Social Worker

Health determinants: Information is collected via past and present history health issues on records

Physical examination: Information is collected via in depth examination of child

Mental status: Information is collected via observation, interview and role play with child for attention, hyperactivity, impulsivity, etc.

Formulation of diagnosis: Diagnosis is made on the basis of collective information from all team members

Development of intervention strategies and support systems after diagnosis: Intervention strategies encompass all settings of home, school, and community and focus on caregiver and child. All team members are involved in this process.

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Appendix D: Phase 1 Psychometric Tools Matrix — Phase 1 (consensus achieved) Age Groups (Years) Domain

4-6 6-16 16 (Adults)

WPPSI – III: Wechsler Preschool and Primary Scales of Intelligence (0-6)

Cognition

Alternate: DAS: Differential Ability Scales (2-17)

WISC -IV: Wechsler Intelligence Scales for Children

WAIS –III: Wechsler Adult Intelligence Scale (16-89)

BBCS-R: Bracken Basic Concept Scale: School Readiness Composite (3-6)

Math: WIAT – II: Wechsler Individual Achievement test (4-85)

Reading: WIAT – II: Wechsler Individual Achievement test (4-85)

Spelling: WIAT-II: Wechsler Individual Achievement tst (4-85)

Written Expression (story only): TOWL – 3: Test of Written Language (7-17)

WRAT – 4: Wide Range Achievement Test (5-75)

Academic

Achievement

Alternate: KSEALS Alternate: WJ – R & III: Woodcock-Johnson Test of Achievement (2-90)

Alternate: WJ – R & III: Woodcock-Johnson Test of Achievement (2-90)

WRAML2: Wide Range Assessment of Memory and Learning (5-90)

WRAML 1-2: Wide Range Assessment of Memory and Learning (5-6 and 6-90)

Memory NEPSY Learning and Memory ( 4)

WRAML2: Wide Range Assessment of Memory and Learning (5-90)

Supplementary:

CAVLT: Children’s Auditory Verbal Learning Test (6-17) or CVLT-C: California Verbal Learning Test-Children’s Version (5-16).


Supplementary:

RAVLT: Auditory Verbal Learning Test (6 to 89) or CVLT-II: California Verbal Learning Test (16-89).


Executive Functioning Preschool BRIEF (4-5) BRIEF: Behavior Rating Inventory of BRIEF: Behavior Rating Inventory of

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Executive Functioning

and Abstract

Reasoning

Preschool BRIEF (4-5)

NEPSY I: Attention and Executive Functioning (4-6)

NEPSY II for 6 is coming out soon, thus no need to discuss sub tests




DKEFS: Delis-Kaplan Executive Function System ( 8). Subtests: Verbal Fluency, Design Fluency, Color-Word Interference, Sorting

Children’s Color Trails Test (8-16)





DKEFS: Delis-Kaplan Executive Function System ( 8).Subtests: Verbal Fluency, Design Fluency, Color-Word Interference, Sorting

Color Trails Test (18-89)


Attention and

Hyperactivity

BASC – II: Behavior Assessment System for Children (2-21)



Adaptive Behavior ABAS-II: Adaptive Behavior Assessment System (0-89)

VABS-II: Vineland Adaptive Behavior Scales (0-90)


Limitation of time

Parent Literacy

Age of Child



VABS: Vineland Adaptive Behavior Scales (0-90)


Limitation of time

Parent Literacy

Age of Child

Need for an interview rather h i i


VABS: Vineland Adaptive Behavior Scales (0-90)


Limitation of time

Parent Literacy

Age of Child

Need for an interview rather h i i

Documents

Download Brain Symposium Report