Knowledge and Attitudes of Health Professionals about Fetal Alcohol Syndrome: Results of a National Survey

2 About this presentation Provides highlights from the survey results report in 2005, including:  Background and context  Survey results… prevention and diagnosis (knowledge, beliefs and practices)  Analysis — what the results suggest and recommendations for action

3 About the Survey When… Carried out March 2001 to October 2002 Why… To learn more about knowledge, beliefs, attitudes and practices of Canadian physicians and midwives about FASD (then FAS/FAE) How… Mail-in and web-based questionnaire About the survey

4 About the Survey Who… Health care professionals from 5 organizations (5,361 in total): Canadian Paediatric Society Canadian Psychiatric Association Canadian Association of Midwives College of Family Physicians of Canada Society for Obstetricians and Gynaecologists of Canada Included providers from 5 regions (West, Prairies, Ontario, Quebec, East) Response rate of 41.3% About the survey

5 About the Survey What we knew going into the study… Disparities and inconsistencies in provider knowledge and practice 9 in 10 Canadians believe alcohol use during pregnancy can lead to life-long disability 45% of Canadians say doctor is best source of information about effects of alcohol during pregnancy 1 Earlier findings point to need for strategies re: provider education and training About the survey

6 Women and Alcohol Use in Canada % to 25% of women drink at some point during pregnancy 2, About 14% of women drink at some point during pregnancy; about 5% drink throughout pregnancy 4 Close to 15% of children under 2 years have mothers who say they drank during pregnancy 5 About the survey

7 Women and Alcohol Use in Canada Women who drink heavily during pregnancy: Young, unmarried women in high-risk populations (including Aboriginal), as well as older (35+) women 6,7 Many have suffered sexual, physical abuse 8,9 Higher proportion live in northern/rural areas 10 About the survey

8 Survey results… on prevention FASD Framework for Action includes Prevention On the prevention front

9 About prevention… Preventing FASD requires prevention of drinking during pregnancy Health care providers must be able to identify: –who is at risk for drinking during pregnancy –what strategies are most effective in reducing alcohol consumption during pregnancy On the prevention front

10 Health care providers say (% agree)…  Drinking during pregnancy is a risk for brain damage (93%)  FAS occurs in all strata of society (95%)  Physician role is to manage alcohol use problems (75%) On the prevention front

11 Many providers do not feel well prepared  Only 56% feel prepared to care for pregnant women/birth mothers re: alcohol abuse  71% feel prepared to access available resources On the prevention front

12 Screening practices need to be improved  40% frequently counsel women about alcohol use before pregnancy  58% obtain detailed history of alcohol use from women of child-bearing age — smaller proportion in the East  74% of family physicians use a standard screening tool (for alcohol use with pregnant patients) — rates are much lower for obstetricians (45%) and midwives (20%) On the prevention front

13 Some provider prevention practices  Provide written material to women of childbearing age (17%)  Discuss what “moderate” drinking means to patients (48%)  Refer heavy/binge drinking pregnant women to treatment (53%)  Advise moderate drinking pregnant women to abstain (70%) On the prevention front

14 Providers want help in the form of…  Referral resources for women (63%)  Registry of FASD specialists for consultation (62%)  Practice guidelines for diagnosis (61%) On the prevention front

15 Why providers don’t discuss drinking with pregnant clients Providers say:  They don’t have enough time (58%)  They believe clients already have good knowledge (43%)  They believe available information is not in a useful format for clients (49%) On the prevention front

16 Why pregnant women who drink don’t seek help Providers perceive some barriers (% of providers who say some of these women…):  fear losing their children (to partner, child welfare system) (92%)  have co-dependence issues (92%)  fear being blamed, shamed (91%)  have a history of domestic abuse (83%) or sexual abuse (72%)  believe that treatment is not available (68%) On the prevention front

17 Survey results suggest…  Attitudes, prevention practices among providers are improving  Providers want, need support and resources to work effectively with women clients re: alcohol abuse  Some need better education… some still advise moderate drinking during pregnancy On the prevention front

18 Survey results suggest…  Few providers collect history of sexual/emotional abuse from clients — an important determinant of alcohol use  Use of screening tools needs a closer look… they may be used mainly when alcohol abuse is suspected, resulting in many women being overlooked On the prevention front

19 Survey results… on diagnosis FASD Framework for Action addresses the importance of diagnosis

20 About diagnosis…  Prenatal exposure to alcohol can cause many physical and behavioural effects  Early, accurate diagnosis can mitigate onset of secondary disabilities and can prevent siblings from being affected by FASD  Diagnosis improves outcomes for those affected and their families Diagnosis issues

21 Provider views on diagnosis… Most or many agree that:  Diagnosis changes things for a child (91%)  Making a diagnosis is within their scope of practice (75%)  FAE is a partial expression of FAS (70%) Fewer believe that:  FAS (31%) or FAE (24%) reporting should be mandatory Only a small proportion recognizes that:  FAE is NOT a less severe form of FAS (14%) Diagnosis issues

22 Provider knowledge of characteristics is patchy…  Only 60% identify that a combination of growth, brain and facial abnormalities provides the best indicator of FASD  Most are aware that prenatal growth deficiency and central nervous system function are indicators (80%)  Many correctly identify key physical characteristics of FASD (64% to 74%) Diagnosis issues

23 Survey results suggest…  Serious gaps in health care provider knowledge, including differences across provider groups and regions — correct, comprehensive and consistent information is needed.  Providers want:  Registry of specialists available for consultation  Referral resources for women  Clinical practice guidelines  Education and training will help fill gaps in knowledge Diagnosis issues

24 Survey results suggest…  Practice guidelines should:  Be integrated into broader education programs  Address primary, secondary, tertiary prevention, as well as diagnosis  Communicate the benefits of early diagnosis, provide interventions to protect future children from FASD  Be disseminated in a way that promotes use Diagnosis issues

25 Survey results suggest…  A broad approach to awareness-raising, education and training of health care providers must reflect the needs identified by providers and the gaps in knowledge Diagnosis issues

26 Recommendations Professional education and practice:  Provincial gov’t action to embed standard alcohol use screening tools on all prenatal records, with support for accurate application of the tool  Better implementation of existing practice guidelines re: recommending no alcohol during pregnancy  Work to improve communication between health care provider and patient to ensure common understanding, terminology and goals Recommendations for action

27 Recommendations Professional education and practice (cont’d):  Better training on diagnostic features of FASD  Improved health care provider understanding of long-term impact of FASD, including secondary disabilities  Improved understanding of terminology (by providers, clients and families)  Improved professional preparedness to provide care to pregnant women who drink and to people with FASD Recommendations for action

28 Recommendations Policy:  Develop consensus among health professional associations re: guidelines for moderate drinking (non-pregnant women) and for those at risk for unplanned pregnancy  Develop guidelines for treating pregnant women discovered to be drinking alcohol  Develop resources for health care providers and for their clients re: impact of alcohol during pregnancy Recommendations for action

29 Recommendations Research:  Determine best strategies for reaching women with information about risks of alcohol use during pregnancy and for reducing consumption among those at risk for pregnancy  Improve understanding of prevalence of alcohol consumption and characteristics of women who drink without using birth control Recommendations for action

30 Recommendations Research (cont’d):  Determine prevalence of FASD — and develop surveillance systems for distribution and prevalence of FASD diagnoses  Monitor health care provider knowledge through surveys and evaluation of education/support programs Recommendations for action

31 References References:  1. Environics Research Group Limited. Canadian Public Awareness of Fetal Alcohol Syndrome and Fetal Alcohol Effects: Results of a National Survey. Health Canada; Executive Summary. 2. Statistics Canada. National Population Health Survey, 1994– Ottawa: Statistics Canada; Statistics Canada. National Longitudinal Survey of Children and Youth, 1994–1995. Ottawa: Statistics Canada, Statistics Canada. National Longitudinal Survey of Children and Youth, 1998–1999. Ottawa: Statistics Canada, Health Canada. Canadian Perinatal Health Report, Ottawa: Minister of Public Works and Government Services Canada; 2003.

32 References References: 6. Williams RJ, Odaibo FS, McGee JM. Incidence of fetal alcohol syndrome in northeastern Manitoba. Can J Public Health 1999;90(3):192–4. 7. Burd L, Moffatt ME. Epidemiology of fetal alcohol syndrome in American Indians, Alaskan Natives, and Canadian Aboriginal peoples: a review of the literature. Public Health Rep. 1994;109(5):688– Abel EL, Sokol RJ. A revised conservative estimate of the incidence of FS and its economic impact. Alcohol Clin Exp Res. 1991; 15(3):514– Clarren SK. Personal communication Tough SC. Report on Maternal Risk Factors in Relationship to Birth Outcome. Health Surveillance, Alberta Health; 1999.