Transcript Physician Survey

FAS Diagnosis :
Health Canada’s Activities
Jocelynn L. Cook, MBA, Ph.D.
FAS/FAE Team
Health Canada
June 18th, 2002
1
Background
Objectives
 To conduct a descriptive survey of the knowledge &
attitudes of physicians towards FAS and its diagnosis
 To determine whether more training is needed to
help physicians feel comfortable with diagnosis and
care of FAS-affected individuals
 To develop recommendations, based on findings, to
be used to direct physician education and training
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Methods
Participation packages distributed through
Canada Post in two waves
October 22, 2001
March 21, 2002
Follow-up
3-week reminder postcard
6-week duplicate package
9-week reminder postcard
12-week telephone contact
Incentive draw for a Palm Pilot for early return
Target response rate of 50%
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Questionnaire
Sections:
General knowledge and attitudes
(10 questions; all participants)
Prevention Issues
(14 questions; Family Physicians, Obstetricians & Gynecologists;
Midwives)
Diagnostic Issues
(16 questions; Pediatricians, Psychiatrists)
Background Information
(10 questions; all participants)
Web-based or paper-and-pencil options
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Preliminary Results
97% first heard of FAS more than 4 years ago.
 99% Pediatricians, 94% Psychiatrists, 96% Midwives
Most frequent sources of information:
 Medical literature (84%)
 CME activities (54%)
 Colleagues (56%)
 Medical school, residency, fellowship (58%)
94% agreed that FAS is an identifiable syndrome.
 96% Pediatricians, 92% Psychiatrists, 87% Midwives
23% felt the effect of alcohol on fetal development
remains unclear.
 21% Pediatricians, 24% Psychiatrists, 33% Midwives
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Preliminary Results
94% did not feel that discussing alcohol would
frighten or anger patients.
 92% Pediatricians, 97% Psychiatrists, 90% Midwives
86% did not feel discussing alcohol would deter
women from continued treatment.
 83% Pediatricians, 91% Psychiatrists, 85% Midwives
Managing problems in the area of alcohol use:
 74% agreed that it is the physician’s role
o 76% that it is the midwife’s role
o 61% Pediatricians, 56% Psychiatrists, 49% Midwives
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Preliminary Results
30% felt unprepared to deal with alcohol misuse
among pregnant women.
 26% Pediatricians, 30% Psychiatrists, 48% Midwives
10% report asking all pregnant women if they are
currently drinking.
 all Midwives
Only 2% report using a screening tool or test for
alcohol use with prenatal patients or in assessing
risk of misuse among women who report drinking
during pregnancy.
 all Midwives
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Preliminary Results
Helpful in clinical practice:
More than 90% identified:
Registry of FAS/FAE specialists available for
consultation
Clinical Practice Guidelines
More than 80% identified:
Literature on the impact of alcohol use
Material or training on FAS/FAE
Referral resources for alcohol problems
Internet resources
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Preliminary Results
More than 60% identified:
Including alcohol use terms on pregnancy
checklists
Telemedicine assistance for diagnosis and
information
56% identified training in addiction counselling
45% Pediatricians, 68% Psychiatrists, 77%
Midwives
43% identified other specific resources
52% Pediatricians, 21% Psychiatrists, 80%
Midwives
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Summary
It is critical that physicians make the diagnosis of FAS
FAS, at present, is underdiagnosed
Health professionals have identified that they require
additional training and resources to feel prepared to
care for FAS-affected individuals and their families
Standardized diagnostic guidelines would be helpful
for increasing the knowledge and comfort levels of
physicians around diagnosis and for gathering
information on FAS Nationwide
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Standardizing Screening,
Diagnosis, and Surveillance
 Health Canada has established a committee to recommend
National guidelines for screening and diagnosis of FAS/FAE
Dr. Nicole Leblanc
Dr. Fred Boland
Dr. Ted Rosales
Dr. Ab Chudley
Dr. Julie Conry
Dr. Christine Loock
Dr. Jocelynn Cook
 Discussion has centered around terminology (FASD),
screening tools, diagnostic procedures, surveillance,
feasibility of standardized National guidelines
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Tasks
To develop recommendations on steps to
obtain national consensus on diagnostic
guidelines
 To address training, reporting and
surveillance
To obtain consensus on research needs and
capacity building in these areas
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Terminology 1: FASD
(Fetal Alcohol Spectrum Disorder)
Recommendations:
1. Fetal Alcohol Spectrum Disorder (FASD) is an
umbrella term that suggests that alcohol is a factor
in this child’s development. It is not a diagnostic
term.
2. Clinicians may use the term FASD for the purposes
of screening and referral that should lead to a more
formal interdisciplinary diagnostic process (using
established definitions of FAS and related
conditions). Reference: Institute of Medicine, p.79
and Minutes of the committee June 5 (4).
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Terminology 2: FASD
(Fetal Alcohol Spectrum Disorder)
3. FASD cannot be used when it is known that the mother did
not drink alcohol during pregnancy.
4.Parameters for the use of the term outside of the
medical/clinical community need to be developed. In the
medical community, only people with the broader
knowledge of FAS diagnostic terminology (IOM) should
use this term.
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Diagnosis
The committee recommends that the
NAC and Health Canada establish
an expert panel to develop national
standards for diagnosis of FAS and
FAE.
Meeting planned for Oct 6th in
Winnipeg
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Screening
Based on available information, the committee believes
there is no reliable screening tool currently in use with
demonstrated validity (and specificity) to predict FAS.
Screening cannot be equated with diagnosis. If the
purpose of screening is to get these children to the
diagnostic clinic, then there must to be clinics and
services available initially and for follow-up
Research is needed into developing effective, sensible,
and reliable screening protocols
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Next Steps
Further discussion of issues of screening
Discussion of issues around surveillance
Deal with issue of FAS diagnostic training
Research priorities and capacity building
(following recommendations from the Saskatoon
meeting)
Gain consensus among Canadian diagnostic
clinics as to one recommended method of
diagnosis to be utilized
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Canadian Diagnostic Clinics
Clinic
Address
Diagnosis Criteria
Capacity
Waiting List
Asante Centre for FAS
Asante Centre for Fetal Alcohol
Syndrome, 22326 (A)
McIntosh Ave, Maple
Ridge, BC, V2X 3C1
IOM, ICD, 4-digit code
2/week
8/month
none
Sunny Hill Health Centre for
Children
4500
IOM, ICD, 4-digit
4/week
16/month
Less than 1 month
(infants);
6
months
(children)
Children’s & Women’s Health
Centre of BC
4500 Oak Street
Vancouver, British
Columbia
V6H 3V4
IOM, ICD, McKusic (medical
genetics)
1/month
12/month
(with
outreach)
IOM, ICD, McKusic (medical
genetics), 4-digit
1/month
1 year
Toronto Hospital for Sick
Children, 555 University
Avenue, Toronto, ON
M5G-1X8
IOM, Checklist
3-6/month
8 months
Alvin Buckwold Child
Development Program,
Kinsmen Children’s
Centre, 1319 Colony St,
Saskatoon, SK
S7N 2Z1
IOM
5-6/week
20-24/month
Oak
Street
Vancouver,
British
Columbia
V6H 3V4
Craniofacial Clinic (BC)
Toronto Hospital
Children
Saskatchewan
for
Sick
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Canadian Diagnostic Clinics
Newfoundland
Medical Genetics Program,
Health Science
Center, 300 Prince Phillip
Drive, St John`s, NF,
A1B 3V6
IOM
2/week
8/month
6 months
Winnipeg (MB)
Clinic for Drug and Alcohol
Exposed Children
(CADEC)
Children’s Hospital
CK 275
840 Sherbrook Street
Winnipeg, Manitoba R3A
1S1
IOM and 4-digit code
4/week
16/month
6-9 months
Thompson (MB)
TOTAL CAPACITY
IOM and 4-digit code
22/week
89/month
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