1

FAS Diagnosis : Health Canada’s Activities

Jocelynn L. Cook, MBA, Ph.D.FAS/FAE TeamHealth CanadaJune 18th, 2002

2

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

3

MethodsParticipation packages distributed through

Canada Post in two wavesOctober 22, 2001March 21, 2002

Follow-up3-week reminder postcard6-week duplicate package9-week reminder postcard 12-week telephone contact

Incentive draw for a Palm Pilot for early returnTarget response rate of 50%

4

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

5

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

6

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 roleo 61% Pediatricians, 56% Psychiatrists, 49% Midwives

7

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

8

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 useMaterial or training on FAS/FAEReferral resources for alcohol problemsInternet resources

9

Preliminary Results

More than 60% identified:Including alcohol use terms on pregnancy

checklistsTelemedicine assistance for diagnosis and

information56% identified training in addiction counselling

45% Pediatricians, 68% Psychiatrists, 77% Midwives

43% identified other specific resources 52% Pediatricians, 21% Psychiatrists, 80%

Midwives

10

Summary

It is critical that physicians make the diagnosis of FASFAS, at present, is underdiagnosedHealth 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

11

Standardizing Screening, Diagnosis, and Surveillance

Health Canada has established a committee to recommend National guidelines for screening and diagnosis of FAS/FAE

Dr. Nicole LeblancDr. Fred BolandDr. Ted RosalesDr. Ab ChudleyDr. Julie ConryDr. Christine LoockDr. Jocelynn Cook

Discussion has centered around terminology (FASD), screening tools, diagnostic procedures, surveillance, feasibility of standardized National guidelines

12

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

13

Terminology 1: FASD (Fetal Alcohol Spectrum Disorder)

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).

Recommendations:

14

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.

15

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

16

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

17

Next Steps

Further discussion of issues of screeningDiscussion of issues around surveillanceDeal with issue of FAS diagnostic trainingResearch 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

18

Canadian Diagnostic ClinicsClinic 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/week8/month

none

Sunny Hill Health Centre for Children

4500 Oak StreetVancouver, British ColumbiaV6H 3V4

IOM, ICD, 4-digit 4/week16/month

Less than 1 month (infants); 6 months (children)

Children’s & Women’s Health Centre of BC

4500 Oak StreetVancouver, British ColumbiaV6H 3V4

IOM, ICD, McKusic (medical genetics)

1/month12/month (with

outreach)

Craniofacial Clinic (BC) IOM, ICD, McKusic (medical genetics), 4-digit

1/month 1 year

Toronto Hospital for Sick Children

Toronto Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G-1X8

IOM, Checklist 3-6/month 8 months

Saskatchewan Alvin Buckwold Child Development Program, Kinsmen Children’s Centre, 1319 Colony St,

Saskatoon, SK S7N 2Z1

IOM 5-6/week20-24/month

19

Newfoundland Medical Genetics Program, Health Science Center, 300 Prince Phillip Drive, St John`s, NF, A1B 3V6

IOM 2/week8/month

6 months

Winnipeg (MB) Clinic for Drug and Alcohol Exposed Children (CADEC)Children’s HospitalCK 275840 Sherbrook StreetWinnipeg, Manitoba R3A 1S1

IOM and 4-digit code 4/week16/month

6-9 months

Thompson (MB) IOM and 4-digit code

TOTAL CAPACITY 22/week89/month

Canadian Diagnostic Clinics