ARCHIVED - Fetal Alcohol Spectrum Disorder

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

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Executive Summary

Fetal Alcohol Spectrum Disorder (FASD) is an umbrella term used to describe the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioural and/or learning disabilities with lifelong implications. The term FASD is not intended for use as a clinical diagnosis.

FASD is the leading non-genetic cause of mental retardation in the Western world, affecting approximately 1% of Canadians. It has been estimated that the lifetime extra costs for affected individuals in Canada are $1.4 million. Perhaps most important are the significant social and health impacts for people with FASD, their families and society.

This study collected information from Canadian health care professionals (a random sample of 5,361 paediatricians, psychiatrists, obstetricians and gynaecologists, midwives and family physicians) to determine their current levels of knowledge and attitudes towards Fetal Alcohol Syndrome (FAS) and alcohol use during pregnancy. The response rate to the survey was 41.3%, with rates ranging from a low of 31.1% among family physicians to a high of 63.5% among midwives.

The results provide insight into areas where educational initia-tives for health care professionals could be directed, as well as areas where they require support in dealing with the complex issues and outcomes associated with alcohol use during pregnancy. The survey findings provide baseline information that could be used in assessing the effectiveness of educational initiatives and policy in the area of health care professional practice.

The study methodology and questionnaire were developed after consultation with stakeholder groups and clinical experts, including the Health Canada National Advisory Committee on FASD and representatives from the Canadian Paediatric Society, the Canadian Psychiatric Association, the Society of Obstetricians and Gynaecologists of Canada, the College of Family Physicians of Canada and the National Association of Midwives, as well as international experts. The study was approved by the Child Health Scientific Review Committee of the Calgary Health Region and received ethical approval from the Conjoint Health Research Ethics Board of the University of Calgary.

Key Findings and Recommendations

In general, the survey results suggest that Canadian health care providers, while aware of some aspects of FASD, require more education and training to support their work of caring for both individuals at risk for having a child with FASD, and for those with FASD and their families. The findings also call for supports to help health care providers make accurate diagnoses and referrals.

A closer look at the survey findings points to the need for specific action to improve the ability of health care professionals to support people with FASD, and their families and caregivers. The results point to the need for a number of changes and improvements on several fronts:

Concerning Professional Education and Practice . . .

• Improvements in the use and implementation of standard screening tools for alcohol use among pregnant women. While almost all health care professionals (94%) ask pregnant women about alcohol use, only 62% report using a standardized screening tool. Those most likely to miss being identified include women over 35 years of age, social drinkers, those who are highly educated, those with a history of sexual or emotional abuse, and those of high socioeconomic status. Provincial government action to embed standard screening tools on alcohol use on all prenatal records and support accurate completion of the screening tool would help to improve screening rates and effectiveness.

• Better implementation of the existing clinical practice guidelines recommending that no alcohol be consumed during pregnancy. Survey results suggest that only 88% of health care professionals provide advice according to these guidelines. Moreover, significant regional variation exists, with 75% of health care professionals in Québec providing this advice, compared to over 90% in the Prairies.

• Improvements in information exchange between health care professional and patient on some key health issues — particularly related to the definition of “moderate alcohol consumption” among non-pregnant women, and the use of alcohol and drugs in the prenatal period and during pregnancy. Less than half of the professionals surveyed said they frequently discuss these issues with all women of childbearing age.

• Better training on the diagnostic features of FAS. Only 60% of those surveyed recognize that the most accurate information about a diagnosis of FAS is a combination of growth, brain and facial abnormalities. Moreover, over one half of health care professionals indicate that the absence of specific training on FAS limits their ability to diagnose.

• Improved professional understanding of the long-term secondary disabilities associated with FAS. Although 70% of providers surveyed are aware that FAS is associated with long-term emotional disorders, only 35% are aware of the association between FAS and inappropriate sexual behaviour.

• Clarifying and effectively communicating the terminology related to Fetal Alcohol Effects (FAE), for the benefit of clients, care providers and systems responsible for the care of people with FAE and their families.

• Improved professional preparedness to care for alcohol dependent/abusing pregnant women and individuals with FAS. Survey results show that fewer than 60% of health care professionals surveyed feel prepared to care for these clients. However, a greater proportion (70%) is prepared to access resources for these clients. Results also indicate that professionals are generally not interested in receiving training in addiction counselling, preferring instead to use a registry of consultation specialists, clinical practice guidelines for diagnosis of FAS, referral resources for women with alcohol problems and/or materials or training on FAS.

Concerning Policy . . .

• Development of consensus among health professional associations concerning guidelines for moderate alcohol consumption for non-pregnant women, as well as guidelines for alcohol use among women at risk for unplanned pregnancy. Eighty-five percent of health care providers routinely address the issue of birth control with their clients/patients; counselling about alcohol use and FAS would ideally be addressed at the same time.

• Development of guidelines for the advice and treatment of pregnant women discovered to be drinking during pregnancy. This approach would reduce reported inconsistencies in practice. For example, approximately 65% of physicians report always discussing the adverse effects of alcohol when a pregnant woman reports moderate alcohol use, which implies that 30% do not. Furthermore, 85% of physicians always discuss the adverse effects of alcohol or advise women to abstain from alcohol when they report binge or heavy drinking during pregnancy, and 53% refer binge or heavy drinkers to treatment.

• Development of resources related to alcohol consumption during pregnancy and the effects of prenatal alcohol exposure — for use as reference information by health care providers and for distribution to their clients.

Concerning Research . . .

• Determining the most effective strategies for providing women with information about the risks of alcohol during pregnancy and for reducing alcohol consumption among women at risk of conception. Research should be carried out to determine the relative effectiveness of different intermediaries for information dissemination and behaviour change (i.e., community leaders, opinion leaders, and non-physician health care professionals such as pharmacists and nurses, birth mothers and teachers).

• Improved understanding of the prevalence of alcohol consumption during pregnancy and iden-tification of the characteristics of women who consume alcohol while not using birth control — information essential for the development of appropriate and targeted interventions.

• Determining the prevalence of FAS. Since prevalence in the general population is largely unknown, and because of the lack of tools and guidelines for diagnosis, it is likely that FAS is frequently misdiagnosed or underdiagnosed.

• Developing and implementing surveillance systems to improve the understanding of the distribution and prevalence of FAS diagnosis — aimed at identifying communities at risk and at improving treatment and outcomes for individuals and families.

• Monitoring of health care professionals' knowledge through periodic surveys, and evaluation of education and support programs — to determine changes in the awareness and knowledge of health care professionals.

While survey results indicate that many health care professionals have a basic understanding of the issues related to both alcohol consumption during pregnancy and FAS, there are clear regional and professional differences in knowledge and attitudes toward both. At the same time, the data clearly call for standardized training programs to meet the specific needs of each health care professional group.

TABLE OF CONTENTS

1. Introduction and Methodology
Purpose, Objectives and Research Questions
Methodology

2. Background — FASD
Prevalence and Costs of FASD
Health Care Professionals and FASD

3. Identification and Prevention of FASD
Importance and Role of Prevention
Prevention Activities in Canada
Survey Results
Discussion of Findings

4. Diagnosing FASD
The Value of Diagnosis
Survey Results
Discussion of Findings

5. Recommendations
Concerning Professional Education and Practice
Concerning Policy
Concerning Identification of Research

References

Appendices
Appendix A: Participation Rates, Response Rates and Sample Description
Appendix B: Data Tables
Appendix C: Survey Questionnaire