1 FAS Diagnosis : Health Canada’s Activities Jocelynn L. Cook, MBA, Ph.D. FAS/FAE Team Health Canada June 18 th, 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 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%

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 o76% that it is the midwife’s role o61% 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 use  Material or training on FAS/FAE  Referral resources for alcohol problems  Internet resources

9 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

10 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

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 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

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 6 th 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 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

18 Canadian Diagnostic Clinics ClinicAddressDiagnosis CriteriaCapacityWaiting List Asante Centre for FASAsante Centre for Fetal Alcohol Syndrome, (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 Oak Street Vancouver, British Columbia V6H 3V4 IOM, ICD, 4-digit4/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) Craniofacial Clinic (BC)IOM, ICD, McKusic (medical genetics), 4-digit 1/month1 year Toronto Hospital for Sick Children Toronto Hospital for Sick Children, 555 University Avenue, Toronto, ON M5G-1X8 IOM, Checklist3-6/month8 months SaskatchewanAlvin Buckwold Child Development Program, Kinsmen Children’s Centre, 1319 Colony St, Saskatoon, SK S7N 2Z1 IOM5-6/week 20-24/month

19 NewfoundlandMedical Genetics Program, Health Science Center, 300 Prince Phillip Drive, St John`s, NF, A1B 3V6 IOM2/week 8/month 6 months Winnipeg (MB)Clinic for Drug and Alcohol Exposed Children (CADEC) Children’s Hospital CK Sherbrook Street Winnipeg, Manitoba R3A 1S1 IOM and 4-digit code4/week 16/month 6-9 months Thompson (MB)IOM and 4-digit code TOTAL CAPACITY22/week 89/month Canadian Diagnostic Clinics