Fetal Alcohol Spectrum Disorder (FASD): Across the Lifespan

262 Pages·2010·5.09 MB·English

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Editors: Egon Jonsson, Liz Dennett, and Gail Littlejohn
Fetal Alcohol Spectrum
Disorder (FASD): Across the Lifespan
Editors:
Egon Jonsson
Liz Dennett
Gail Littlejohn
Fetal Alcohol Spectrum Disorder

(FASD): Across the Lifespan

Proceedings from an IHE Consensus Development Conference 2009

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Institute of Health Economics

1200 – 10405 Jasper Avenue

Edmonton AB Canada T5J 3N4

www.ihe.ca

ISBN 978-1-897443-80-4

Cover: Photo by Walter Tychnowicz/Wiresharp Photography Edmonton, Alberta
Fetal Alcohol Spectrum Disorder
Fetal Alcohol Spectrum
(FASD): Across the Lifespan

Disorder (FASD): Across the Lifespan

Proceedings from an IHE Consensus Development Conference 2009

The IHE is publishing a number of books in a series called Health Care and Disease Management
Proceedings from an IHE Consensus Development Conference 2009
Series with Wiley-Blackwell. In this series the following books on FASD are available at Editors: Egon Jonsson, Liz Dennett, and Gail Littlejohn
www.wiley.com/go/ihe

Prevention of Fetal Alcohol Spectrum Disorder FASD. Who is responsible?

ISBN: 978-3-527-32997-7

Fetal Alcohol Spectrum Disorder FASD. Management and Policy Perspectives
ISBN: 978-3-527-32839-0

Editors: Egon Jonsson, Liz Dennett, and Gail Littlejohn

Institute of Health Economics

1200 – 10405 Jasper Avenue

Edmonton AB Canada T5J 3N4

www.ihe.ca

ISBN 978-1-897443-80-4

Cover: Photo by Walter Tychnowicz/Wiresharp Photography Edmonton, Alberta
Institute of Health Economics Table of Contents
Foreword
The Institute of Health Economics (IHE) is an independent, not-for-profit organization that
performs research in health economics and health technology assessment to assist health policy Opening Remarks
and practice.
The Honourable Janis Tarchuk, Alberta Minister of Children and Youth Services
IHE Board Members The Honourable Iris Evans, Alberta Minister of Finance and Enterprise
Chair Nancy Reynolds, President and CEO, Alberta Centre for Child, Family and Community
Dr. Lorne Tyrrell – Chair, Institute of Health Economics and Professor and CIHR/GSK Chair in Research; Moderator
Virology, University of Alberta
Question 1: What is Fetal Alcohol Spectrum Disorder (FASD) and how is it diagnosed?
Government and Public Authorities
Overview of FASD
Mr. Jay Ramotar – Deputy Minister, Alberta Health and Wellness
Dr. Annette Trimbee – Deputy Minister, Advanced Education and Technology Gail Andrew, Member, Board of Directors, Canada Northwest FASD Research Network;
Dr. Jacques Magnan – President and CEO, Alberta Innovates – Health Solutions Medical Site Lead - Pediatrics; Medical Director - FASD Clinical Services; and
Ms. Alison Tonge – Executive Vice President, Strategy and Performance, Alberta Health Services Pediatric Consultant, Pediatric Program, Glenrose Rehabilitation Hospital
Academia A personal perspective
Dr. Renée Elio – Associate Vice President, Research, University of Alberta
Myles Himmelreich, Director of Programming, Canadian FASD Foundation
Dr. Tom Feasby – Dean of Medicine, University of Calgary
Dr. Philip Baker – Dean of Medicine, University of Alberta Jury questions and answers
Dr. Tom Noseworthy – Professor and Head, Community Health Sciences, University of Calgary
Audience questions and answers
Dr. James Kehrer – Dean of Pharmacy, University of Alberta
Dr. Herb Emery – Svare Chair in Health Economics, University of Calgary Question 2: Do we know the prevalence and incidence of FASD in different populations, and
Dr. Doug West – Department of Economics, University of Alberta can the reporting be improved?
Industry Prevalence and incidence in Alberta and Canada
Mr. Terry McCool – Vice President, Corporate Affairs, Eli Lilly Canada, Inc.
Suzanne Tough, Scientific Director, Alberta Centre for Child, Family and Community
Ms. Patricia Massetti – Vice President, Public Affairs and Patient Access, Merck Canada
Research; Professor, Paediatrics and Community Health Sciences, University of Calgary
Dr. Bernard Prigent – Vice President and Medicine Director, Pfizer Canada, Inc.
Mr. Grant Perry – Vice President, Public Affairs and Reimbursement, GlaxoSmithKline, Inc. Prevalence and incidence internationally
Mr. William Charnetski – Vice President, Corporate Affairs, AstraZeneca Canada, Inc.
Philip May, Professor of Sociology and Professor of Family and Community Medicine,
Other
University of New Mexico; Senior Research Scientist, Center on Alcoholism, Substance
Mr. Doug Gilpin – Chair, Audit and Finance Committee
Abuse, and Addictions
CEO
Jury questions and answers
Dr. Egon Jonsson – CEO, Institute of Health Economics
Audience questions and answers
Extent and impact on child development
Ben Gibbard, Developmental Pediatrician, Alberta Children's Hospital; Assistant
Professor, Department of Pediatrics, Faculty of Medicine, University of Calgary
Prevalence of FAS in foster care
Institute of Health Economics Table of Contents
The Institute of Health Economics (IHE) is an independent, not-for-profit organization that FFoorreewwoorrdd
performs research in health economics and health technology assessment to assist health policy OOppeenniinngg RReemmaarrkkss ............................................................................................................................1
and practice.
TThhee H Hoonnoouurarabblel eJ aJnanisi sT Taracrhcuhku,k A, Alblebretrat aM Miniinstiesrte orf oCf hCilhdirlednre ann adn Ydo Yuothu tShe rSveircveisc es
IHE Board Members TThhee H Hoonnoouurarabblel eI rIirsi sE Evavnasn,s A, lAblebretart aM Miniinstiesrte orf oFfi Fnainnacne caen ad nEdn Etenrtperripser ise
Chair NNaannccyy R Reeyynnooldlds,s P, Prerseisdiednetn at nadn dC CEOEO, A, lAblebretar tCa eCnetrnet rfeo rfo Cr hCilhdi,l dF,a Fmailmy ialyn da nCdo Cmommumniutyn ity
Dr. Lorne Tyrrell – Chair, Institute of Health Economics and Professor and CIHR/GSK Chair in R Reseesaeracrhc;h M; Modoedreartoarto r
Virology, University of Alberta
QQuueessttiioonn 11:: W Whhaat ti sis F Feetatal lA Alclcoohhool lS Spepcetcrturmum D Disiosrodredre (rF (AFSADSD) a) nadn hd ohwo wis iist diti adgiangonseods?e d? ..........5
Government and Public Authorities
OOvveerrvvieieww o of fF FAASSDD ....................................................................................................................5
Mr. Jay Ramotar – Deputy Minister, Alberta Health and Wellness
Dr. Annette Trimbee – Deputy Minister, Advanced Education and Technology GaGil aAiln Adrnedwr,e wM, eMmebmerb, eBr,o Baroda rodf oDfi Dreicrteocrtso,r Cs, aCnaandaad Na oNrothrtwhewset sFt AFSADS DR eRseesaeracrhc hN Netewtworokr;k ;
Dr. Jacques Magnan – President and CEO, Alberta Innovates – Health Solutions MeMdiecdailc Sailt eS iLtee aLdea -d P -e Pdeiadtiraitcrsic; sM; Medeidcaicla Dl Direircetcotro r- F- AFSADSD C Clinliinciacla Sl eSrevrivciecse;s ;a anndd P ediatric
Ms. Alison Tonge – Executive Vice President, Strategy and Performance, Alberta Health Services CoPnseudlitaatnritc, PCeodnisautrltiacn Pt,r Pogedraiamtr,i Gc Plernorgorsaem R, eGhlaebnirloitsaet iRoenh Haboislpitiatatilon Hospital
Academia AA p peerrssoonnaal lp peersrpspecetcitviev e ..............................................................................................................9
Dr. Renée Elio – Associate Vice President, Research, University of Alberta
MMyylleess HHiimmmmeelrlreeicichh, ,D Dirierecctotor ro of fP Prorgorgarmammminign,g C, aCnaandaidaina Fn AFSADS DF oFuonudnadtiaotnio n
Dr. Tom Feasby – Dean of Medicine, University of Calgary
Dr. Philip Baker – Dean of Medicine, University of Alberta JJuurryy q quueestsitoionns sa annd da nasnwsweresr s ...................................................................................................12
Dr. Tom Noseworthy – Professor and Head, Community Health Sciences, University of Calgary
AAuuddieiennccee q quuesetsitoionns sa nadn da nasnwsweresr s ...........................................................................................13
Dr. James Kehrer – Dean of Pharmacy, University of Alberta
Dr. Herb Emery – Svare Chair in Health Economics, University of Calgary QQuueessttiioonn 22:: D Doo w wee k knnooww t hthe ep prerveavlaelnecnec ea nadn din icnicdiednecnec oef o Ff AFSADS Din idni fdfiefrfeenret npto ppouplautliaotniso,n asn, da nd
Dr. Doug West – Department of Economics, University of Alberta ccaann tthhee rreeppoorrtitningg b bee i mimpprorovevded?? ....................................................................................................14
Industry PPrreevvaalelennccee a anndd i nincicdiednecnec ein i nA Alblebretart aa nadn Cd aCnaandaad a ................................................................14
Mr. Terry McCool – Vice President, Corporate Affairs, Eli Lilly Canada, Inc.
SSuuzzaannnnee T Toouugghh, ,S Sccieienntitfiifcic D Dirierecctotor,r ,A Alblbeertrata C Cenentrter ef ofro rC Chihldil,d F, aFmamilyil ay nadn Cd oCmommumnuitnyi ty
Ms. Patricia Massetti – Vice President, Public Affairs and Patient Access, Merck Canada
RReesseeaarrcchh;; PPrrooffeessssoorr,, PPaaeeddiaiatrtricicss a anndd C Coommmmunuintiyt yH Heaelathlt hS cSiceinecnecse, sU, nUivneivrseirtsyi toyf oCfa Clgaalrgya ry
Dr. Bernard Prigent – Vice President and Medicine Director, Pfizer Canada, Inc.
Mr. Grant Perry – Vice President, Public Affairs and Reimbursement, GlaxoSmithKline, Inc. PPrreevvaalelennccee a anndd i nincicdiednecnec ein itnetrenrantaiotinoanlalyl ly .............................................................................19
Mr. William Charnetski – Vice President, Corporate Affairs, AstraZeneca Canada, Inc.
PPhhiilliipp MMaayy, ,P Prroofefessssoorr o of fS Sooccioiolologgy ya nadn dP Prorfoefsessosro or fo Ff aFmaimlyi layn adn Cd oCmommumnuitnyi tMy eMdiecdinicei,n e,
Other
UUnniivveerrssiittyy o of fN Neeww M Meexxicioco; ;S Seneinoiro rR Reseesaeracrhc hS cSiceinetnistti,s tC, eCnetenrt eorn o Anl cAolchoohliosmlis, mSu, bSsutbasntcaen ce
Mr. Doug Gilpin – Chair, Audit and Finance Committee AAbbuussee,, aanndd A Addddicictitoionns s
CEO
JJuurryy q quueestsitoionns sa annd da nanswsweresr s ...................................................................................................22
Dr. Egon Jonsson – CEO, Institute of Health Economics
AAuuddieiennccee q quuesetsitoionns sa nadn da nasnwsweresr s ...........................................................................................23
EExxtetennt ta anndd i mimppaactc to non c hcihldil dd edveevleolpompmenetn t ...............................................................................24
BBeenn GGiibbbbaarrdd, ,D Deevveeloloppmmenentatal lP Pedeidaitartirciicaina,n A, lAblebretart Ca hCilhdirldenre'sn H’s oHspoistpailt;a Al;s Asissstaisntta nt
PPrrooffeessssoorr,, DDeeppaarrttmmeennt to of fP Peeddiaiatrtircics,s ,F Faacuclutlyt yo fo Mf Medeidciicnien, eU, nUinveivresirtsyi toyf oCf aClgaalgrya ry
PPrreevvaalelennccee o of fF FAASS i nin f ofostsetre rc acraer e............................................................................................30
Fetal Alcohol Spectrum Disorder (FASD): Across the Lifespan v
Susan Astley, Professor of Epidemiology/Pediatrics, University of Washington; Director,
Washington State Fetal Alcohol Syndrome Diagnostic and Prevention Network
Genetic pre-disposing factors .................................................................................................37
Albert Chudley, Medical Director, Winnipeg Regional Health Authority Program in
Genetics and Metabolism; Professor, Department of Pediatrics, University of Manitoba
Direct and indirect mechanisms for alcohol damage to the brain .......................................41
Joanne Weinberg, Professor and Distinguished University Scholar and Acting
Department Head, Cellular and Physiological Sciences, University of British Columbia
Jury questions and answers ...................................................................................................47
Audience questions and answers ...........................................................................................51
Question 3: What are the consequences of FASD for individuals, their families, and society? 53
Economic implications ...........................................................................................................53
Philip Jacobs, Professor, Gastroenterology Division, Department of Medicine,
University of Alberta; Director of Collaborations, Institute of Health Economics
Consequences for the community ..........................................................................................55
Mary Berube, Director, Intergovernmental Initiatives, Ministry Support Services
Division, Alberta Children and Youth Services
Impact on system usage within foster care ............................................................................58
Linda Burnside, Executive Director, Disability Programs, Manitoba Family Services
and Housing, Winnipeg, MB
Jury questions and answers ...................................................................................................64
Audience questions and answers ...........................................................................................66
Co-morbidities with mental health for an individual with FASD .........................................67
Dan Dubovsky, FASD Specialist, Substance Abuse and Mental Health Services
Administration (SAMHSA), FASD Center for Excellence, Rockville, MD
Consequences for the community supporting adults with FASD .........................................71
Diane Malbin, Executive Director, Fetal Alcohol Syndrome Consultation, Education,
and Training Services, Inc. (FASCETS), Portland, OR
Question 4: How can FASD be prevented?
Pre-conception initiatives .......................................................................................................80
Lola Baydala, Associate Professor of Pediatrics, University of Alberta
Inventory of primary prevention campaigns .........................................................................83
vi Fetal Alcohol Spectrum Disorder (FASD): Across the Lifespan
Robin Thurmeier, FASD Resources Researcher, Saskatchewan Prevention Institute
Primary care physician perspective ........................................................................................85
June Bergman, Associate Professor, Department of Family Medicine, Faculty of
Medicine and Dentistry, University of Calgary
Jury questions and answers ...................................................................................................88
Audience questions and answers ...........................................................................................91
Mentoring programs for at-risk mothers ...............................................................................93
Nancy Whitney, Clinical Director, King County Parent-Child Assistance Program,
University of Washington
Strength and support: A women’s perspective .......................................................................98
Amy Salmon, Managing Director, Canada Northwest FASD Research Network; Clinical
Assistant Professor, School of Population and Public Health, Faculty of Medicine,
University of British Columbia
Prevention of FASD: A broader strategy in women’s health ..............................................103
Nancy Poole, Research Associate, British Columbia Centre of Excellence for Women’s
Health; Research Consultant, Women and Substance Use Issues, British Columbia
Women’s Hospital, Vancouver, BC
Jury questions and answers .................................................................................................108
Audience questions and answers ..........................................................................................111
Question 5: What policy options could more effectively support individuals with FASD and
their families across the lifespan? ...............................................................................................113
Educational system, parental, and community support .......................................................113
Frank Oberklaid, Director, Centre for Community Child Health, Royal Children’s
Hospital; Professor, Pediatrics, University of Melbourne
Shifting responsibility from the individual to communities of care ....................................117
Audrey McFarlane, Executive Director, Lakeland Centre for Fetal Alcohol Spectrum
Disorder, Cold Lake, Alberta
Education Policy ...................................................................................................................122
Elizabeth Bredberg, Education Consultant, Bredberg Research and Consulting in
Education, Vancouver, British Columbia
Jury questions and answers .................................................................................................126
Audience questions and answers .........................................................................................128
Fetal Alcohol Spectrum Disorder (FASD): Across the Lifespan vii
Development of life skills: education, parenting, and family mentoring ...........................129
Claire Coles, Professor, Department of Psychiatry and Behavioral Sciences and
Pediatrics, Emory University School of Medicine; Director, Fetal Alcohol and Drug
Exposure Clinic, Marcus Autism Center, Children’s Health Care of Atlanta
Life stages and transitions ....................................................................................................132
Brenda Bennett, Executive Director, FASD Life’s Journey, Inc., Winnipeg, Manitoba
Social services and corrections ............................................................................................136
Sharon Brintnell, Professor, Department of Occupational Therapy, and Director,
Occupational Performance Analysis Unit, Faculty of Rehabilitation Medicine,
University of Alberta
Jury questions and answers .................................................................................................140
Treatment for FASD .............................................................................................................141
John McLennan, Assistant Professor and Child Psychiatry Consultant, Departments of
Community Health Sciences, Psychiatry and Pediatrics, University of Calgary
Justice issues .........................................................................................................................146
Mary Kate Harvie, Associate Chief Judge, Provincial Court of Manitoba
Policy development in FASD ................................................................................................149
Dorothy Badry, Assistant Professor, Faculty of Social Work, University of Calgary
Jury questions and answers .................................................................................................153
Audience questions and answers .........................................................................................156
Question 6: What further research into FASD is needed? ........................................................158
Health and social policy .......................................................................................................158
Sterling Clarren, CEO and Scientific Director, Canada Northwest FASD Research
Network; Clinical Professor, Pediatrics, School of Medicine, University of Washington;
Clinical Professor, Pediatrics, Faculty of Medicine, University of British Columbia
Clinical ..................................................................................................................................162
Sara Jo Nixon, Professor, Department of Psychiatry, and Director, Biobehavioral Core,
Clinical and Translational Science Institute, University of Florida
Child health and well-being .................................................................................................165
Bruce Perry, Senior Fellow, Child Trauma Academy, Houston, Texas
Jury questions and answers .................................................................................................168
viii Fetal Alcohol Spectrum Disorder (FASD): Across the Lifespan
Audience questions and answers ....................................................................................172
General Final Conference Questions and Answers ............................................................173
Jury chair reads the consensus statement ...........................................................................175
Questions and discussions after the reading of the jury’s consensus statement ................175
Appendix 1: Conference Program .......................................................................................185
Appendix 2: Consensus Statement .......................................................................................229
Fetal Alcohol Spectrum Disorder (FASD): Across the Lifespan ix