APPROACHES OF CANADIAN PROVIDERS TO THE DIAGNOSIS … · Approaches of Canadian providers to the diagnosis of fetal alcohol spectrum disorder on Fetal Alcohol Syndrome and professional

APPROACHES OF CANADIAN PROVIDERS TO THE DIAGNOSIS OF FETAL ALCOHOL SPECTRUM DISORDERS

Margaret Clarke, 1 Suzanne C Tough,1,2,3 Matt Hicks,3 Sterling Clarren4

1Department of Paediatrics, University of Calgary, Calgary, AB 2Department of Community Health

Sciences, University of Calgary, Calgary, AB 3Decision Support Research Team, Calgary Health Region, Calgary, AB 4Department of Pediatrics, University of Washington, Seattle, WA

ABSTRACT Background A better understanding of the attitudes and knowledge of providers towards diagnosis of fetal alcohol spectrum disorders (FASD) will assist in the development of appropriate supports and interventions. Objective To determine approaches of providers to the diagnosis of FASD. Methods Between October 2001and May 2002, a survey was mailed to a national random sample of paediatricians, psychiatrists, obstetricians and gynaecologists, family physicians, and midwives in Canada, who were current members of professional organisations (N=5361). Results The overall response rate was 41.3%. Over 90% of providers agreed that a diagnosis of fetal alcohol syndrome (FAS) can change things for affected children and 75% agreed making a diagnosis is within their scope of practice. The most noted barrier to diagnosis was lack of training (56.4%). The most common sources of FAS information were medical journals (76.4%), medical school (63.6%), and Continuing Medical Education (CME) seminars (50.9%). Approximately 60% of providers correctly identified the combination of growth, brain and facial abnormalities as providing the most accurate diagnosis of FAS. Over 60% of providers identified emotional disorders, disrupted school experience, addictions and legal problems as long term outcomes associated with FAS. There were significant differences (p≤0.001) across provider group with regard to scope of practice, barriers to diagnosis, source of knowledge, diagnostic knowledge, and understanding of long term outcomes. Discussion Providers have identified lack of training as a barrier to diagnosis of FAS. Thus, there are potential opportunities for provider training to improve the probability of diagnosis for affected children. Key Words: fetal alcohol spectrum disorders; fetal alcohol syndrome; diagnosis; physician’s practice patterns; professional practice; knowledge; education

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urrent reports regarding increased rates of alcohol use in women of childbearing age and the anticipated impact on the

occurrence of fetal alcohol syndrome (FAS) and related disorders have highlighted the need to better understand the attitudes and knowledge of health care providers towards diagnosis of this problem. Studies have shown that physicians’ knowledge, attitudes and beliefs about a health

problem, such as alcohol abuse or FAS, can either predispose or deter them from screening, identifying and managing the problem.1

Surveys in Canada and the United States have found inconsistencies in diagnosis, treatment, and management of children with fetal alcohol syndrome (FAS) due to gaps in physician knowledge and attitudes regarding FAS.2 A survey by the Michigan Medical Association

JFAS Int 2005;3:e2 - Jan. 2005 © The Hospital for Sick Children 2005

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Approaches of Canadian providers to the diagnosis of fetal alcohol spectrum disorder

found that health care professionals felt that alcohol’s effect on the fetus was clear, FAS is not being over-diagnosed, and that making a diagnosis of FAS can improve treatment plans for affected individuals.3 However, in this study physicians also identified that they were not sufficiently familiar with FAS or fetal alcohol effects (FAE).

Fetal alcohol syndrome and related conditions are the most common cause of preventable birth defects and developmental disabilities4;5 It is now recognised that prenatal alcohol exposure can lead to a broad spectrum of developmental, emotional, behavioral, and social deficits, now being referred to as fetal alcohol spectrum disorders (FASD).6 Alcohol is a physical and behavioural teratogen7, and the detrimental effects of alcohol on fetal growth and development are likely to be dose-dependent.8 The excessive consumption of alcohol during pregnancy has been associated with: pre- and/or postnatal growth deficiency, characteristic facial dysmorphology, and central nervous system (CNS) dysfunction.4;5;9-29 Children expressing all of these characteristics are described as having FAS. The extent of impairment to a child is thought to result from differences in the amount of alcohol ingested, the pattern and timing of drinking, or the mother’s genetic ability to metabolise alcohol.7

FASD also includes alcohol-related neurodevelopmental disorders (ARND) and alcohol-related birth defects (ARBD). These terms are used to describe the large number of children affected by prenatal alcohol exposure who do not display all of the characteristics for a diagnosis of FAS.30 Also, the term FAE is used when a child displays some but not all the findings of FAS.10

No two individuals with FAS/FAE/ARND/ARBD present with the same anomalies and disabilities—all vary along a continuum14 and all may have significant negative effects and impacts on the child, their family and society.30 Around 10 to 40% of children born to alcohol-abusing women are diagnosed with FAS; however, even children who do not exhibit physical anomalies can suffer from psychosocial impairment(s).31 Children with FAS, FAE, ARND, and ARBD can express cognitive, behavioural, and psychosocial problems that cause lifelong disabilities, although the resulting impairments may vary with age and circumstances.4 Short term

impacts on offspring resulting from various levels of maternal alcohol consumption during pregnancy have been investigated from a variety of perspectives, often suggesting a continuum of neuropathology, even with respect to FAS.32

Hence, precise diagnostic guidelines that accurately reflect the spectrum of fetal alcohol exposure are a critical component of FASD management. The Alberta Medical Association guidelines for the diagnosis of FAS identify the goals of diagnosis to include: assisting professionals to recognise the disorders associated with in-utero alcohol exposure, early accurate diagnosis, preventing secondary disabilities, and preventing siblings from being affected by FAS.33 The recommendations include: use of standard tools for diagnosis, referral of affected individuals, post diagnosis strategies (such as contraceptive counselling), intervention and provision of support, and information to caregivers and family.33 The guidelines also include background information on diagnosis regarding establishment of maternal drinking history, physical and neurological characteristics of FAS, neurodevelopmental and behavioural characteristics and diagnostic criteria for FAS, partial FAS and alcohol-related effects, including ARND and ARBD.33 On a national level, Health Canada is in the process of developing Canadian diagnostic guidelines.34 However, even with such initiatives in place, more information regarding provider understanding of the diagnosis and long term sequelae of FASD is required to assist in the continued development of appropriate supports and interventions across Canada. Thus, the objective of the present study was to describe characteristics of health care providers with regard to knowledge and attitudes regarding diagnosis of FASD and to draw comparisons between provider groups.

METHODS

Questionnaire The questionnaire used in this study was modified from a prior survey used by the Alberta Medical Association and a Saskatchewan study by Nanson et al.2;35 Modifications that increased the scope of the questionnaire were based upon six months of consultation with a National Advisory Committee


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on Fetal Alcohol Syndrome and professional groups (Obstetricians and Gynaecologists, Family Physicians, Paediatricians, Psychiatrists and Midwives). The questionnaire was then piloted among health professionals attending an FAS conference, and responses were reviewed to assess completion time, the level of complexity, readability, and interest. Feedback from both the pilot survey and professional organization reviews was incorporated to arrive at the final questionnaire. As the only condition to the participation and endorsement of professional organizations, the research team avoided questions related to ethnicity and personal lifestyle habits (e.g. smoking, alcohol use).

The questionnaire consisted of 4 parts including: General Knowledge (10 questions); Prevention Issues (13 questions); Diagnostic Issues (15 questions); and Demographic and Practice Information (10 questions). All were a forced-choice format with response options varying depending on question content (e.g., yes/no; Likert-type scales; select all that apply). The Likert scales used were 4 or 5-point scales such as: frequently, sometimes, rarely, never; or strongly agree, agree, undecided, disagree, and strongly disagree.

The questionnaire could be completed as a paper copy or electronically on the web and in English or in French. The final questionnaire was formatted into a Teleform data management program for electronic data entry. The web-based version was programmed with HTML for secure completion at an independently created web page on the University of Calgary web site. The questionnaire package was also professionally translated into French. To increase the accuracy of the French translation, two translators were involved in the process, one of which had specialized training in medical translation. Return of the completed questionnaire was taken to signify consent to participate. Ethics The study was approved for scientific and administrative merit by the Calgary Health Region Child Health Scientific Review Committee. Ethical approval was granted by the Conjoint Health Research Ethics Board (CHREB) of the Faculties of Medicine, Nursing and Kinesiology,

University of Calgary, and the Affiliated Teaching Institutions. Sampling Potential participants were randomly selected from membership lists obtained from the Canadian Association of Midwives (N = 344), the College of Family Physicians of Canada (N = 11,258), the Canadian Paediatric Society (N = 2,374), the Canadian Psychiatric Association (N = 1,439), and the Society for Obstetricians and Gynaecologists of Canada (N = 1,728). To allow for sufficient sample size for potential analysis by region of practice, 60% of the midwives membership was randomly selected. Given the large population of family physicians, paediatricians, and psychiatrists, and original underestimates of the number of obstetricians, random sampling in these groups was based on the number of active members in each province to gather sufficient data for regional analysis. For these groups, 20% were randomly sampled from provincial populations where providers numbered greater than 500, 25% were chosen from populations of 101 to 500, and 50% were chosen from populations less than 100. The final non-overlapping sample included physicians from paediatrics (n = 1,396), family practice (n = 2,378), psychiatry (n = 1,439), and obstetrics (n = 539), as well as practicing midwives (n = 197). Sample Recruitment The professional groups were surveyed in two waves. The first mail out of survey packages to midwives, psychiatrists and paediatricians (n=2,493) began in October 2001 and collection was completed 12 weeks later after follow-up. Family physicians and obstetricians (n = 2,984) were surveyed between March and May 2002, and collection was completed in October 2002 after follow-up. Survey Package The survey package contained: 1). A cover letter describing the relevance of the study, printed on letterhead of the appropriate professional organization, hand-signed in blue ink by a co-principal investigator and copy-signed by the president of the professional organization. The exception was family physicians who received the


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package on University of Calgary letterhead and the letters were hand-signed by each of the co-principal investigators; 2). A Preamble and Instruction sheet describing the contents of the questionnaire and instructions for completing the paper or web-based version of the questionnaire; 3). The questionnaire; and 4). Notice of eligibility for a random draw for a Palm Pilot if the questionnaire was completed and returned within 3 weeks of mail out. Follow Up Strategy A reminder post card was sent to non-respondents approximately three weeks after the initial mailing (n = 4,241). Three weeks later, a reminder letter and second copy of the survey was sent to non-respondents (n = 3,707).Approximately three weeks after that, a second reminder post card was mailed with the instruction to contact the study team if the non-respondent had actively chosen not to participate (n = 3,365). Finally, a follow-up telephone call inviting participation was made to a random sample of obstetricians and gynaecologists as well as family physicians in the attempt to improve the response rates. Those contacted were offered the opportunity to participate by completing the survey through telephone interview, completing it on-line, or having the paper version re-mailed or faxed to them. Interviewers fluent in the preferred language of the respondent conducted the phone follow-up.

Attempts were also made to locate eligible participants whose surveys were returned due to incorrect mailing addresses or who were found to have incorrect telephone numbers in the telephone follow-up. This included cross-referencing contact information with publicly available physician directories and telephone directory assistance. Statistical Analysis The planned sample size for this descriptive survey was estimated to be large enough to allow for data modelling and to control for potential covariates, such as year of graduation and rural/urban practice. Preliminary sample size calculations were completed, and based on a minimum sample size of 375 within physician speciality, we would find as significant a

difference of about 14% (n = 174 per group) in response to a survey item such as “It is OK to drink after the first trimester.”

All data were transferred into SPSS/PC version 11.0 for analysis. Descriptive analysis and bivariate comparisons (χ2and χ2 trend) were completed to understand providers’ attitudes, knowledge and practices towards FASD across provider group. Comparisons were made across provider group and a p value of 0.05 or less was considered significant. We have included the exact p values in the tables, so the reader can assess both the clinical and statistical relevance of the finding. There is variation in the denominator because not all questions were applicable to all participants and because of missing data for some questions.


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TABLE 1 Distribution of Responses Compared to National Datai

Region Provinces Included Distribution of Responses

%

National Distribution

%

West British Columbia, NWT, Yukon, Nunavut 14.4 13.6

Prairies Alberta, Saskatchewan, Manitoba 21.0 14.9

Ontario Ontario 39.9 40.7

Quebec Quebec 15.7 24.2

East New Brunswick, Nova Scotia, PEI, Newfoundland 9.0 6.6

RESULTS

Of 5334 surveys distributed, 2216 were returned for a response rate of 41.3%. Respondents in the Prairies may be over-represented while those in Quebec under-represented, as compared to national

distributions of providers; however, the distribution of responses for the West, Ontario and the East reflect the national distribution of providers (Table 1). Response rates were greatest for midwives (63.5%) and paediatricians (52.7%) and lowest for family physicians (31.1%) (Table 2).

TABLE 2 Response Rate by Professional Group

Professional Group Total Membership N

Random Sample (returned/sent)

Response Rate %

Paediatricians 2374 735/1396 52.7

Family Physicians 11258 740/2378 31.1

Psychiatrists 1439 391/851 45.9

Obstetricians and Gynaecologists 1728 225/539 41.7

Midwives 344 125/197 63.5

Demographics Family physicians had the highest proportion of providers under age 40 (p≤0.01) (Table 3). Paediatricians and psychiatrists were significantly more likely to have university appointments (p≤0.01) and to have urban practices (p≤0.01) (Table 3). FAS Diagnosis Issues Paediatricians, psychiatrists, family physicians and midwives were asked about issues associated with diagnosis of FAS. Table 4 indicates that only 32% of midwives felt that making a diagnosis of FAS was within their scope of practice compared with

over 65% of the remaining professional groups (p≤0.001). Less than 35% of all providers felt that mandatory reporting of FAS or FAE would be agreeable, with psychiatrists least in favour (p≤0.001). All professionals identified benefit to the child with diagnosis; however, paediatricians were most likely to identify that the diagnosis can change outcomes for the child (p=0.002).


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TABLE 3 Sample Description

Note: Agreement defined as agree and strongly agree

Overall n (%)

Paediatrician n (%)

Psychiatrist n (%)

Midwife n (%)

Family Physician

n (%)

Obstetrician n (%)

Age group p<0.05

<40 672(30.8) 182(24.8) 47(12.2) 37(29.8) 341(46.4) 65(29.1)

40+ 738(33.8) 223(31.1) 133(34.6) 51(41.1) 252(34.3) 79(35.4)

50+ 541(24.8) 202(28.2) 134(34.9) 31(25.0) 125(17.0) 49(22.0)

60+ 232(10.6) 110(15.3) 70(18.2) 5(4.0) 17(2.3) 30(13.5)

Total 2183(100.0) 717(100.0) 384(100.0) 124(100.0) 735(100.0) 223(100.0)

Mean age (SD)

45.7(10.3) 47.8(10.8) 50.4(9.0) 43.8(9.3) 41.3(8.8) 46.3(10.0)

Year of Graduation p<0.05

<1959 50(2.4) 32(4.4) 15(3.9) 1(1.9) 173(23.6) 3(1.4)

<1979 810(39.4) 348(47.7) 206(53.6) 19(35.2) 224(0.6) 83(39.3)

<1989 633(30.8) 209(28.6) 126(32.8) 21(38.9) 336(45.8) 74(35.1)

1990+ 565(27.5) 141(19.3) 37(9.6) 13(24.1) 733(100.0) 51(24.2)

Total 2058(100.0) 730(100.0) 384(100.0) 54(100.0) 1466(100.0) 211(100.0)

University Appointment p<0.05

Yes 1143(53.4) 503(71.1) 244(65.2) 23(19.0) 251(34.8) 122(55.7)

No 998(46.6) 204(28.9) 129(34.5) 98(81.0) 470(65.2) 97(44.3)

Gender

Male 1125(51.0) 399(54.6) 251(64.9) 367(49.7) 108(48.2)

Female 1079(49.0) 332(45.4) 136(35.1) 124(100.0) 371(50.3) 116(51.8)

Practice p<0.05

Urban 1677(78.5) 686(90.0) 324(87.1) 79(64.8) 486(67.4) 152(70.7)

Rural 424(19.8) 62(8.8) 41(11.0) 30(24.6) 230(31.9) 61(28.4)

Both 36(1.7) 9(1.3) 7(1.9) 13(10.7) 5(0.7) 2(0.9)

Region p<0.05

West 319(14.4) 80(10.9) 53(13.6) 25(20.0) 110(14.9) 51(22.7)

Prairie 466(21.0) 133(18.1) 79(20.2) 14(11.2) 183(24.7) 57(25.3)

Central ON 884(39.9) 287(39.0) 181(46.3) 68(54.4) 288(38.9) 60(26.7)

Central QC 348(15.7) 170(23.1) 47(12.0) 15(12.4) 82(11.1) 34(15.1)

East 199(9.0) 65(100.0) 31(7.9) 3(2.4) 77(10.4) 23(10.2)

*56.3% of all health care professionals felt that 1-2 occasions per week was moderate, 18% felt that 3 was moderate. 37% of felt that one drink per occasion was moderate, 54% felt that 2 drinks per occasion was moderate.† There is variation in the denominator as some questions were not answered by all participants


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Table 4 Overall Issues Associated with Diagnosis

Overall n (%)

Paediatrician n (%)

Psychiatrist n (%)

Midwife n (%)

Family Physician

n (%)

Chi square

p≤

Agreed with the following:

Diagnosis changes things for child 2007(90.9) 691(94.4) 346(88.5) 111(88.8) 663(90.0) 0.002

Mandatory reporting of FAS 600(30.6) 262(36.1) 77(20.1) 45(36.9) 216(29.6) 0.001

Mandatory reporting of FAE 465(23.9) 201(28.0) 58(15.1) 37(30.3) 169(23.3) 0.001

Making a diagnosis of FAS was within scope of practice 1498(75.0) 624(84.9) 257(65.7) 40(32.0) 570(77.0) 0.001

Identified Barriers to Diagnosis The perceived barriers related to diagnosis of FAS differed significantly across provider group with training identified as a primary barrier by 56% of all providers (Table 5).

About 25% of family physicians and paediatricians suggested that lack of time was a barrier to diagnosis whereas over 65% in these groups identified lack of training as a barrier.

. TABLE 5 Identified Barriers to Diagnosis and Helpful Supports

Overall n (%)

Paediatrician n (%)

Psychiatrist n (%)

Midwife n (%)

Family Physician

n (%)

Chi Square

p≤

Many doctors do not make a diagnosis of FAS in their practice due to:

Lack of time 436(20.0) 172(23.9) 50(13.2) 8(6.8) 206(27.9) 0.001

Lack of specific training 1234(56.4) 495(68.2) 203(52.9) 24(20.5) 512(69.4) 0.001

A belief that making the diagnosis will not make a difference to the individual

265(12.2) 113(15.7) 70(18.4) 4(3.4) 78(10.8) 0.001

Supports perceived as helpful:

Registry of specialists available for consultation about FAS/FAE

1341(61.8) 386(53.9) 227(53.9) 103(85.1) 489(66.9) 0.001

Clinical Practice Guidelines for diagnosis of FAS 1323(60.8) 478(66.7) 214(55.7) 85(69.7) 439(59.8) 0.001

There is variation in the denominator as some questions were not answered by all participants


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Information Sources Regarding FAS The majority of providers acquired FAS knowledge from medical journals and books (Table 6). Of note, midwives were more likely than other providers to use books and journals (84%) but less likely than other providers to acquire information through CME seminars or rounds (p≤0.001). In general, paediatricians

were more likely than other physicians to acquire knowledge of FAS from CME seminars, rounds, and medical journals. In addition, paediatricians were significantly more likely to have heard of FAE prior to 1997 compared to other health care professionals (p≤0.001).

TABLE 6 Identification of Information Sources Regarding FAS

Overall n (%)

Paediatrician n (%)

Psychiatrist n (%)

Midwife n (%)

Family Physician

n (%)

Obstetrician n (%)

Chi Square

p≤

Agree FAS is an identifiable syndrome

2066(94.0) 698(96.0) 362(92.6) 111(90.2) 690(94.0) 205(91.9) 0.028

Prior to 1997 had heard of:

FAS 2181(98.8) 727(99.2) 382(97.7) 124(99.2) 727(98.8) 221(99.1) 0.171

FAE 1225(55.7) 496(68.1) 203(52.5) 73(58.4) 322(43.7) 131(58.7) 0.001

Gained knowledge of FAS from:

Medical journals and books

1694(76.4) 604(82.2) 306(78.3) 105(84.0) 507(68.5) 172(76.4) 0.001

Medical school, residency or fellowship

1410(63.6) 508(69.1) 205(52.4) 19(15.2) 522(70.5) 156(69.3) 0.001

CME seminars or rounds

1128(50.9) 447(60.8) 156(39.9) 34(27.2) 362(48.9) 129(57.3) 0.001

Parents or patients 535(24.1) 192(26.1) 105(26.9) 31(24.8) 169(22.8) 38(16.9) 0.035

Gained knowledge of FAE from:

Medical journals and books

1356(61.2) 529(72.0) 229(58.6) 93(74.4) 366(49.5) 139(61.8) 0.001


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Medical school, residency or fellowship

754(34.0) 311(42.3) 124(31.7) 16(12.8) 220(29.7) 83(36.9) 0.001

CME seminars or rounds

953(43.0) 417(56.7) 135(34.5) 27(21.6) 258(34.9) 116(51.6) 0.001

Parents or patients 320(14.4) 113(15.4) 73(18.7) 20(16.0) 92(12.4) 22(9.8) 0.012

Diagnostic Knowledge about Characteristics of FAS In general, paediatricians were most aware of the facial and CNS dysfunction features of FAS (p≤0.001) (Table 7). Less than 60% of

respondents correctly recognised it was a combination of growth, brain and facial abnormalities that provided the most accurate diagnosis of FAS.

TABLE 7 Diagnostic Knowledge about Characteristics of FAS Overall

n (%) Paediatrician

n (%) Psychiatrist

n (%) Midwife

n (%) Family

Physician n (%)

Chi Square

p≤

Flat philtrum 1412(74.3) 632(88.8) 214(58.2) 84(73.7) 482(68.2) 0.001

Thin upper lip 1316(69.4) 647(90.7) 177(48.8) 80(70.8) 412(58.3) 0.001

Short palpebral fissures 1211(64.1) 579(81.8) 192(52.5) 53(47.7) 387(55.0) 0.001

CNS dysfunction 1678(87.7) 668(93.6) 306(82.3) 93(80.9) 611(85.8) 0.001

Prenatal growth deficiency 1536(80.4) 640(89.6) 254(68.8) 95(81.9) 547(76.8) 0.001

Agree that combination of growth, brain and facial abnormalities provide the most accurate information about diagnosis of FAS

1084(59.7) 416(61.4) 215(61.4) 55(49.1) 398(58.8) 0.194


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Identification of Long Term Outcomes Associated with FAS Although about 70% of professional groups were aware that FAS was associated with long term emotional disorders, fewer (35%) were aware of the association between FAS and

inappropriate sexual behaviour (Table 8). While there were significant differences across groups, between 60% and 70% of respondents recognised an association between FAS and disrupted school experience, addictions and legal problems.

TABLE 8 Long Term Outcomes Associated with FAS

Overall n (%)

Paediatrician n (%)

Psychiatrist n (%)

Midwife n (%)

Family Physician

n (%)

Chi Square

p≤

Long term emotional disorders 1345(70.8) 485(69.7) 265(70.5) 81(70.4) 514(72.0) 0.271

Disrupted school experience 1303(67.3) 449(63.1) 263(69.0) 87(73.1) 504(69.7) 0.001

Addictions 1190(61.7) 380(53.5) 235(62.0) 85(70.8) 490(68.0) 0.001

Legal problems 1336(68.2) 474(66.8) 256(67.4) 75(63.0) 531(73.6) 0.019

Inappropriate sexual behaviour 671(34.8) 250(35.3) 140(36.8) 47(39.2) 234(32.6) 0.001

DISCUSSION

Overall, there was consensus that making a diagnosis of FAS was within the scope of practice of the providers surveyed and that making a diagnosis improves outcomes for children. Of note, the primary reason for lack of diagnosis was not a lack of time, despite the fact that the clinical time required to make a diagnosis of FASD is usually well above what is needed in many other conditions. Instead, the primary reason for lack of diagnosis was related to lack of specific training, which is not surprising given that diagnosis is best accomplished in conjunction with a multidisciplinary team. About 70% of professionals recognised the facial features associated with FAS and over 80% identified CNS dysfunction and prenatal growth deficiency as distinguishing features of FAS. Only 60% of providers recognised that the most accurate information regarding diagnosis of FAS was a combination of growth, brain and facial abnormalities. This is higher than findings from a smaller scale Toronto study36;

although the questions were not identical, the overall evidence indicates a continued need for educational programs and FASD diagnosis training for providers.

Over 60% of the sample identified the key secondary disabilities of FAS, including emotional disorders, disrupted school experience, addictions and legal problems, as being associated with FAS; however, fewer than 35% recognised inappropriate sexual behaviour as a secondary disability of FAS. Increasingly, FAS research has focused on the long-term effects of prenatal alcohol exposure although most studies in the past have been cross-sectional in design37;38 and longitudinal studies remain relatively rare.39 In one 12-year follow-up study, it was found that the length of intrauterine alcohol exposure was inversely related to academic, psychosocial and social outcomes, regardless of severity of initial diagnosis in infancy.15 Another longitudinal study of forty-four FAS-afflicted children was carried out over a 10 year


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period.40 At follow-up, one-third were found to be living in institutions, one-third living with biological, foster or adopted parents, and the last third had changed living places or no information was available. Such longitudinal research aims to improve knowledge around secondary disabilities associated with a primary diagnosis of FAS. Knowledge about secondary disabilities may prompt providers to inquire about prenatal alcohol exposure in cases where a diagnosis of FAS may have been missed in infancy.

Almost 100% of professionals had heard of FAS by 1997 which demonstrates that other provinces in Canada have caught up with Saskatchewan where in a 1990-91 study, 99% of pediatricians, family physicians and general practitioners had heard of FAS.2 Fewer than 60% had heard of FAE prior to 1997. The majority gained knowledge from academic sources including medical textbooks and journals as well as medical school, residency and fellowship, which is similar to previous findings.2 Given that journals and textbooks are the source of information identified by most care providers, some consideration should be given to the information they contain. A recent review of 81 obstetrical textbooks found that a majority contained recommendations related to alcohol use during pregnancy that were contrary to current public health recommendations.41 Of 29 texts published after 1990, only 24% contained a consistent recommendation for abstinence from alcohol consumption during pregnancy. In addition, 52% of the texts published after 1990 were contradictory in that they condoned some level of drinking during pregnancy in at least one passage and then in another passage recommended abstinence.41 Thus, there is opportunity for consistent messages in the commonly sought sources of information used by care providers. In addition, health care providers could be encouraged to seek current materials in areas of emerging research.

Other sources, in particular diagnostic guidelines, assist physicians in recognising disorders associated with fetal alcohol exposure, promoting early and accurate diagnosis and offering interventions in order

to prevent future FAS children in affected families.33 However, guidelines alone have often had limited effect on changing physician behavior.42 Across Canada there have been a variety of initiatives to not only help improve health providers’ access to current information regarding FASD, but also to improve the application of this information. For example, in Alberta, clinical practice guidelines were published in 1999 in the areas of FAS prevention and diagnosis after a survey in 1998 showed considerable gaps in knowledge and attitudes. A comprehensive implementation strategy for the guidelines was developed, including educational events, conferences, and formal training courses. Currently 5% of family physicians and paediatricians in Alberta have received advanced training in diagnosis and prevention of FAS and almost 50% have received baseline information via Telemedicine and regular CME routes.43

While every effort was undertaken to increase the response rate in this study, including incentives, repeat mailing, web-based survey completion and phone follow up, we achieved a final response rate of 41.3%.44-

47 The challenges associated with lower response rates relate to the generalizability of the findings to the surveyed population, such that if responders differ substantially from non-responders, the generalizability of the findings is questionable. However, if non-responders were similar to responders, the response rate will not affect the generalizability to the surveyed populations.48-

50 Studies of physician responses to surveys have suggested that questionnaires with relatively low response rates (e.g., 40%) for which there are limited systematic differences between responders and non-responders could be considered valid.51 Indeed, comparisons of late responders, as a proxy for non-responders, to early responders in physician surveys have revealed few differences with respect to demographics and practice characteristics such that non-response bias may be less of a concern in physician surveys than in surveys of the general public.44 Indeed, with the exception of family physicians (31.1%), we were able to achieve a response rate greater


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than 40% across provider groups, which may not necessarily be unacceptable for physician surveys.50;51 The distribution of responses suggests that the results are likely generalizable to most regions of Canada.

CONCLUSION This study represents the first national survey of providers in the area of FASD in Canada. There is a great need to help providers recognise the primary and secondary disabilities of FASD, especially in affected individuals who do not have mental retardation or dysmorphic features as part of their diagnosis. In the future, there will be a great need for providers to work closely with colleagues in the fields of addictions, paediatrics and neuropsychology to develop a comprehensive multidisciplinary approach to this significant, and ultimately preventable, condition. Acknowledgments We would like to acknowledge the financial contribution of Health Canada to this survey, Health Canada and the FAS National Advisory Committee for their support on survey development, and the professional organisations for their support and assistance. Also, we would like to recognise the additional assistance of Jocelynn Cook, Lysanne Delogne, Monica Jack, Janelle Jubb, Christine Loock, Laura Schorn, and Jonathan Snider. Institutions work should be attributed to: The University of Calgary and Calgary Health Region Support This study was funded by Health Canada and supported by the FAS National Advisory Committee and the Calgary Health Region. Corresponding Author: [email protected] REFERENCES 1. Diekman ST, Floyd RL, Decoufle P, Schulkin

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11Canadian provider national distribution data from: Canadian Medical Association. Number of Active Physicians by Province/Territory and Specialty, Canada, 2001. CMA Masterfile. 2001. Available from: http://www.cma.ca/staticContent/HTML/N0/l2/statinfo/pdf/specialty-prov2001.pdf


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APPROACHES OF CANADIAN PROVIDERS TO THE DIAGNOSIS … · Approaches of Canadian providers to the diagnosis of fetal alcohol spectrum disorder on Fetal Alcohol Syndrome and professional