Journal

of Substance

Abuse,

4, 187-

195 (1992)

BRIEF REPORT

Pediatricians’

Perspectives

on Fetal Alcohol

Syndrome

Barbara A. Morse Roberta K. ldelson Winifred H. Sachs Lyn Weiner Boston University

School of Medicine

Lawrence C. Kaplan University

of Connecticut

Medical

School

Since the identification of fetal alcohol syndrome (FAS) in 1973, significant inroads have been made towards understanding the effects of alcohol on fetal development. However, it is not clear if these findings are considered clinically relevant by pediatricians. This survey was designed to assess clinical knowledge, practice, and attitudes concerning alcohol-related birth defects. Data were collected in a questionnaire that was mailed to 2.34 randomly selected Massachusetts pediatricians. Responses suggest that a substantial proportion of pediatricians have knowledge about the effects of alcohol on pregnancy. However, many considered themselves unprepared to deal with this topic. More physicians suspected FASlFAE than made the diagnosis. Almost three fourths reported they would find professional education in this area helpful. Broader dissemination of research findings in clinically relevant formats and improving the sense of preparedness among pediatricians have the potential to improve the care of children born to heavily drinking pregnant women.

During the past 15 years, research on alcohol and pregnancy has increased awareness of ethanol’s association with birth defects. Fetal alcohol syndrome (FAS) is currently thought to occur in a range from .3 to 1.9 per thousand live births (Abel & Sokol, 1987, 1991). Fetal alcohol effects (FAE) are estimated to occur at three to four times the rate of FAS (Rosett & Weiner, 1984). Intervention strategies have been demonstrated to contribute to the maximal development of children with FAS/FAE (Aronson & Olegard, 1985; Nanson, Habbick, dc Casey, 1981). However, the scientific literature on FAS/FAE has included little information on diagnostic criteria and treatment protocols for affected children. The vast majority of articles have appeared in journals directed to researchers in the fields of substance abuse and teratology. In the past 4 years, there have been only six articles on FAS in pediatric journals (including those of subspecialties) and two in general medical journals, as listed in Index Medicw. In the same time period, there were 19 clinical reports with pediatric relevance in alcohol-specific Correspondence Education Program,

and requests for reprints 7 Kent Street, Brookline,

should be sent MA 02146.

to Barbara

A. Morse,

Fetal

Alcohol

187

188

B.A. Morse,

R.K. Idelson,

W.H.

Sachs,

1. Weiner,

and

L.C. Kaplan

journals. The limited discussion of clinical issues in the pediatric literature may decrease the likelihood that pediatricians would appropriately recognize and treat children with FAS/FAE. Our research on therapeutic strategies for alcohol-abusing pregnant women and their children has led to the development of training programs for healthcare professionals (Weiner, McCarty, 8c Potter, 1989; Weiner, Rosett, 8c Edelin, 1982). Evaluations of these programs demonstrated that the findings on FAS generally available in the scientific literature have not been useful to pediatricians. Physicians expressed confusion about the diagnoses of FAS and FAE. FAS is diagnosed when there are signs in each of three categories: growth retardation, CNS abnormalities, and facial dysmorphology (Sokol 8c Clarren, 1989). FAE is diagnosed in the presence of functional or anatomic anomalies and a history of maternal alcohol use. The actions of ethanol on prenatal development can vary widely. Children with FAS exhibit individual patterns of clinical expression, mediated by gestational age(s) of exposure, dose, and maternal characteristics (parity, ethnicity, nutritional status, genetic predisposition; Rosett & Weiner, 1984). The diagnosis is elusive to many clinicians as the signs are not specific to alcohol exposure and there are no confirming biological markers. Furthermore, maternal drinking histories, crucial to the diagnosis, are not always available or accurate. The difficulty in making a diagnosis is evidenced by reports from social workers, special educators, and psychologists who suspect numerous undiagnosed cases among their clients. Parents also report difftculties and delays in obtaining a diagnosis for their affected children. Lack of diagnosis leads to fragmented therapeutic approaches, repetitive work-ups, inappropriate school planning, parental guilt, failed foster placements, and difficult adoptions. Pediatricians have an important opportunity to diagnose children with FAS and to establish effective intervention protocols. Proper planning allows schools and parents to deal with deficits and handicaps. The purpose of this study was to evaluate pediatric practice pertaining to alcohol-related birth defects, to assess the dissemination of research findings on FAS and FAE and its impact on clinical behavior, and to explore the most effective way to increase clinical awareness. We hypothesized that physicians would be categorized in groups distinguished by clinical activity in the area of alcoholrelated birth defects. We expected that physicians with more constructive attitudes towards FASIFAE would have more clinical experience with diagnosed cases, and vice versa.

METHODS Sample Data were collected in the summer of 1988 in a statewide, anonymous questionnaire mailed to pediatricians. (We limited our survey to pediatricians as they are the primary providers of child care in Massachusetts.) A random number was generated to select a one-third sample (N = 420) of all pediatricians listed

Pediatricians

and FAS

189

with the state Board of Registration in Medicine. After 4 weeks, one follow-up questionnaire was sent to nonrespondents. Valid responses were received from 234 of the 408 eligible physicians, for an overall response of 57% (excluding 12 retired and out-of-state respondents). This response rate compares favorably with other mail surveys of physician populations (Russell, Kang, & Uhteg, 1983; Smith & Barnes, 1982). Physicians in the study represented the full spectrum of age groups and practice settings; 55% graduated from medical school between 1938 and 1973 when EAS was fn-st described in the American medical literature, and 45% since 1973. The majority (68%) were men. Reflecting the demographics of the state, 50% of the respondents practiced primarily in urban locations, 42% in suburban sites, and 8% in rural areas. The most common modes of practice were group (32%) and solo (3 1%). Nearly three fourths were university-affiliated. On average, 72% of their time was devoted to direct patient care. The mean patient load was 80 (SD = 60) patients per week. Most (89%) were board-certified in pediatrics, including 11% who also were certified in a pediatric subspecialty. An additional 9% described themselves as board-eligible.

Measures A four-page questionnaire, designed by the authors, included multiple-choice and 4- and 5-point scalar items chosen to elicit information in four general areas: demographics, knowledge and clinical experience, and attitudes about FAS/ FAE.’ To encourage participation, an effort was made to keep the questions concise and easy to comprehend. It was estimated that responding required no more than 10 min. The instrument was pilot tested with a sample of pediatricians who were personally interviewed after completing the survey. Physicians were asked about their understanding of FAS and FAE, their diagnostic experience, and the source and duration of knowledge. Beliefs and attitudes about etiology and treatment were explored. Physicians also were asked to estimate their preparedness to work with patients and families with FAS/FAE and whether particular support materials would be helpful to them.

Analysis Chi-square analyses were used to test associations. Four and 5-point scalar responses were collapsed to yield categories of either yeslno or yeslneutrallno. Level of statistical significance was set at p < .Ol to prevent Type I error. All variables were tested for their relationship to the demographic variables, experience diagnosing FASIFAE, and the feeling of preparedness to address alcoholrelated birth defects.

’ Questionnaire

is available

from

the

first

author

upon

request.

190

B.A. Morse,

R.K. Idelson,

W.H.

Sachs,

1. Weiner,

and L.C. Kaplan

RESULTS Knowledge

and Beliefs

A majority of respondents were aware of FAS and recognized its clinical signs. Virtually all (99Y)L) said that they had heard of FAS and FAE. Most (87%) had “first heard” at least 5 years earlier. Most frequent sources of information were medical journals (85%), CME seminars or rounds (56%), and medical training (53%). Few (13%) had heard from patients. Most (94%) agreed that “FAS is an identifiable syndrome.” When physicians were asked to indicate, on a 4-point scale, whether specific clinical findings might lead them to consider the possibility of FAS, the majority responded positively for facial dysmorphology (94%), growth retardation (92%), and CNS dysfunction (84%). Affirmative responses for the nonspecific abnormalities associated with FAS were markedly lower: ocular abnormalities 49%, cardiac malformations 45%, and renal abnormalities 20%. Responses to the statement, “FAS is easiest to diagnose during the first 12 months” suggest limited clinical understanding; only 19% disagreed, whereas 39% did not know. To explore a possible bias towards considering FAS more frequently among children of a particular socioeconomic status, respondents were asked if they believed that “FAS is primarily seen in low income families”; few (18%) agreed, 54% disagreed, and 28% did not know. The diagnosis of FAE remains more elusive than FAS. The term “fetal alcohol effects” was correctly understood as a “partial expression of the syndrome” by 51% of respondents and was unfamiliar to 38%. Consistent with that response, 70% agreed that “Clearer clinical criteria are needed to diagnose fetal alcohol effects.” Diagnostic

Experience

Slightly more than half (53%) of the physicians had diagnosed FAS; significantly fewer (28%) had diagnosed FAE (p < .OOl). Among the physicians who had diagnosed FAE, 80% also had diagnosed FAS. The number of children diagnosed with FAS by individual physicians ranged from l-20. The 5% of physicians who had diagnosed four or more cases reported 54% of the cases in the survey. There were no differences between those who diagnosed multiple cases of FAS and all others. Almost two thirds (64%) of the respondents reported having seen a child with FAS diagnosed by another physician. About one third (34%) of the respondents had referred children to other physicians to confirm a diagnosis of FAS or FAE. More than half (56%) had suspected FAS at one time but did not diagnose it, and 9% had been convinced of a diagnosis but did not record it. Analysis was conducted with physicians categorized into three groups: diagnosed FAE (whether or not diagnosed FAS; n = 65); diagnosed FAS but not FAE (n = 72); or, diagnosed neither (n = 97). There were significant differences in associated clinical behaviors among the three groups, with the FAE group reporting more relevant clinical activity (Table 1). Understanding the term FAE

Pediatricians

Table

1.

and FAS

Diagnostic

191

Experience

by Associated

Clinical

Diagnostic

Associated

Clinical

Diagnosed FAE (N = 65) %

Behavior

Seen child with FAS referred by another physician. Suspected but did not diagnose FASIFAE. Convinced of diagnosis but did not record in patient’s chart. Referred child to confirm diagnosis of FASIFAE. Routinely take maternal alcohol history. Learned about FAS since medical training journals CME/rounds

Behavior

(N = 234)

Experience

Diagnosed FAS (N = 72) %

Diagnosed Neither (N = 97) %

’ P

76

72

51

.OOl

83

62

34

,001

22

8

I

59

48

7

.OOl

69

43

50

,002

71 91 68

72 89 51

42 78 50

.OOl ns. n.s.

was associated with making the diagnosis (p < .OOl). Significantly more of those diagnosing FAE thought that the facial dysmorphology associated with FAS was easily recognized (Dx, FAE: 80% vs. Dx, FAS only: 60%, p < .004). The FAE group considered the possibility of FAS significantly more often in the presence of the associated abnormalities: cardiac malformation (p < .Ol), renal abnormalities ( p < .O l), and ocular abnormalities ( p < .O1). Patients were the source of information significantly more often for this group than for other physicians (p < .OOl). The physicians who had not diagnosed FASIFAE reported that whatever experience they had was during training ( $J < .OO1). Fewer reported that FAS was an identifiable syndrome (p < .005). More (10%) reported that the effects of alcohol on fetal development remain unclear, but the differences were not significant. Diagnosing FAS/FAE was not significantly associated with any of the demographic variables: primary site of practice, university affiliation, board certification, subspecialty, size of practice, gender of practitioner or year of graduation from medical school. Clinical

Behaviors

and Attitudes

The majority (84%) did not think that a discussion of drinking patterns would frighten or anger parents or deter them from treatment. A little over half (54%) stated that they “routinely” take a maternal alcohol history, 16% take alcohol histories only to confirm a diagnosis of FAS, 7% to “diagnose nonspecific anomalies,” and 7% to seek either diagnosis. Only 17% report never taking an alcohol history. Routinely taking an alcohol history was not significantly associated with

B.A. Morse,

192

Table 2.

Taking

a Drinking

History

R.K. Idelson,

and Clinical Frequency

Associated

Clinical

Behavior

Sachs,

Behavior

of Taking

1. Weiner,

and

L.C. Kaplan

(N = 234)

a Drinking

History

Sometimes %

Always %

Diagnosed child with FAE. Suspected, but did not diagnose FAS/FAE. Referred child to confirm diagnosis of FASIFAE. Saw child with FAS referred by another physician. Understand term “FAE.” CNS dysfunction leads to suspect FAS diagnosis.

W.H.

Never %

76

49

37

,001

63

62

28

.oo 1

42

33

13

,003

69 61

67 48

43 29

.01 .Ol

93

84

76

.Ol

diagnosing FAS, but was associated with diagnosing FAE (p < .OOl). Physicians who routinely take an alcohol history reported more clinical experience with FAS/FAE (Table 2). In addition, they expressed more positive attitudes. More (40%) felt that “making a diagnosis of FAS can improve treatment plans for the affected child” (p < .005); and that “discussions about alcohol will not deter patients from treatment” (48%; p < .OOl). Significantly more (27%) members of this group graduated from medical school in the last 15 years (p < .003). When asked how well prepared they felt to deal with parents or patients regarding FAS or FAE, 47% responded positively. Feeling prepared was significantly associated with having had relevant clinical activity with FAS or FAE (Table 3). Attendance at CME courses also was positively associated with feeling prepared (p < .Ol). Difftculty in dealing with FAS/FAE was suggested by 37% of the physicians who had diagnosed FAS, yet still felt unprepared.

Table 3. Percentage of Physicians Experience (IV = 231)

who Fee.1 Prepared

Feel Diagnostic and Clinical Experience Diagnosed child with FAS. Diagnosed 4 or more cases of FAS. Diagnosed child with FAE. Suspected but not diagnosed FASIFAE. Referred child to confirm diagnosis of FASIFAE. Understand term “FAE.”

Prepared

(n =

109)

by Diagnostic

Feel

and Clinical

Unprepared

%

(n = 122) %

72

37

,001

18 42

4 16

.Ol ,001

66

47

.003

43 60

25 41

,004 .001

Pediatricians

193

and FAS

Resources From a list of support materials, physicians indicated which materials and services they might find helpful. Physician training was requested most often (74%) followed by a registry of pediatric FAYFAE specialists (61%), literature for parents (SO%), referral resources for parents with alcohol problems (540/o), and a pregnancy history checklist (46%). About one fourth (24%) wanted training or consultation in alcohol counseling. Physicians who had diagnosed FAE were significantly more likely to request support materials in all categories (p < .Ol).

DISCUSSION The majority of pediatricians who responded to this survey correctly defined FAS/FAE and reported that making the diagnosis is beneficial to treating affected children. The responding physicians fall into three groups based on a continuum of knowledge, experience, and attitudes: the first group had made the most difftcult diagnosis of FAE, the second had diagnosed FAS, and the third had diagnosed neither. In addition to their increased diagnostic experience, the FAE group routinely took alcohol histories and considered themselves prepared to deal with the issues of alcohol-related birth defects. The FAS group reported less clinical experience, felt somewhat less prepared, and took maternal alcohol histories less often. The group that never diagnosed patients with FAS/FAE felt least prepared, rarely took alcohol histories and had not heard from patients about FAS. They expressed doubt that FAS is an identifiable syndrome. The significant differences observed among these distinct groups lends validity to the questionnaire. In this data set, feeling prepared, feeling confident talking to parents, and routinely taking a drinking history are associated with increased clinical experience with FASIFAE. This finding is consistent with earlier research that demonstrated that experience working with alcoholic patients increased willingness to treat them (Chafetz, Blane, 8c Abram, 1962; Chappel & Schnoll, 1977). Attitude theory supports this finding; engaging in a behavior strongly influences a change in attitude in the direction of the behavior (Doob, 1967; LaPierre, 1967). These findings also suggest that one path towards improving the treatment of FAS lies in increasing pediatricians’ feelings of preparedness to address the issue, and that experience with FAS/FAE-affected families may be the best way to achieve this goal. Attendance at CME courses on FAS was associated with feeling prepared. Continuing education courses have been demonstrated to influence clinical behavior and increase the number of referrals for alcohol treatment during pregnancy (Weiner et al., 1982; 1989). Additional training, as requested by two thirds of this sample, could enhance the feeling of preparedness. A reluctance to formalize the diagnosis also was observed. Over half of all respondents, and 83% of the most experienced group, report having suspected FAS but not having made the diagnosis. A lesser number (9%) were convinced of

194

B.A. Morse,

R.K. Idelson,

W.H.

Sachs,

1. Weiner,

and L.C. Kaplan

the diagnosis but did not record it. Twenty-two percent of the FAE group did not always record the diagnosis. This hesitancy may result from a perceived lack of benefits to a given patient and family. Until specific treatment protocols are developed and disseminated, making the diagnosis may be perceived in some instances as little more than labeling. The scientific literature provides little basis for specific interventions and clinical anecdotes suggest that the current treatment approach is to deal with individual symptoms. Few pediatricians have been involved in this field and little appears in the pediatric literature. The programs that have intervened effectively with parents and children have not reported treatment protocols and have received scant attention (Aronson 8c Olegard, 1985; Spohr & Steinhausen, 1984). Although deficits persisted in some areas, improvement was reported in neurologic, psychiatric, and cognitive functioning. The researchers recommended early intervention with individual instruction and a consistent, supportive environment, with attention to hyperactivity and perceptual problems. Working with parents to help them understand their children’s problems and teaching them techniques to help maximize their potential was considered to be the most effective strategy. The relatively low number of pediatricians (53%) who report that they routinely take maternal drinking histories leaves a gap in patient care. Identification of drinking patterns provides the opportunity to refer parents for substance abuse treatment and reduces the risk of FASIFAE in future pregnancies. In addition, knowledge of fetal alcohol exposure enables the pediatrician to make the diagnosis. Recognition of the constitutional bases of the behavioral and learning problems facilitates adoption of appropriate treatment strategies. In the absence of knowledge, parents and providers often attribute the child’s developmental problems to inadequate parenting. Recognition of FAS can alleviate guilt and frustration. Energy can then be turned to intervention and remediation, and costly repetitive diagnostic procedures can be eliminated. Identification and treatment of parental substance abuse can improve the environment in which the child is raised. During the past 15 years, there has been an explosion of knowledge and concern about alcohol-related birth defects, but much remains to be learned. There is, however, sufficient information to develop programs for affected children. Broader dissemination of scientific findings in pediatric journals, CME courses, and medical school curricula will increase the primary provider’s understanding of the child exposed to alcohol during pregnancy and reinforce the value of making a diagnosis. Prevention of FAS, through treatment of addicted women, will always be the most effective strategy. But for children with FAS/FAE, informed comprehensive medical, psychological, and educational care is needed to help them achieve their greatest potential. REFERENCES Abel,

E.L., & Sokol, R.J. (1987). Incidence related anomalies. Drug and Alcohol

of fetal alcohol syndrome Dependence, 19, 5 l-70.

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impact

of FAS-

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E.L., & Sokol, R.J. (1991). A revised conservative estimate of the incidence of FAS and its economic impact. Alcoholism: Clinical U Experimental Research, 15, 514-524. Aronson, M., & Olegard, R. (1985). Fetal alcohol effects in pediatric and child psychology. In U. Ryberg, C. Aging, J. Engel, L.A. Pernow, & S. Rossner (Eds.), Alcohol and fhe developing brain. New York: Raven. Chafetz, M.E., Blanc, H.T., & Abram, H.S. (1962). Establishing treatment relations with alcoholics. Journal of N~IVOIU and Mental Disor&s, 34, 395-409. Chappel, J.N., & Schnoll, S.H. (1977). Doctors’ attitudes: Effect on the treatment of chemically dependent patients. Journal of the American Medical Association, 239, 23 18-23 19. Doob, L.W. (1967). Behavior of attitudes. In M. Fishbein (Ed.), Readings in attitude theory and measurement New York: Wiley. LaPierre, R.T. (1967). Attitudes versus actions. In M. Fishbein (Ed.), Readings in affide theg, and meawrement. New York: Wiley. Nanson, J.. Habbick, B.F.. & Casey, R.E. (1981). Fetal alcohol syndrome in Saskatchewan: Some preliminary findings. Perinatal Bull&n, 14, 3-4. Rosett, H.L., & Weiner, L. (1984). Alcohol and thefetus: A clinical perspective. London: Oxford University Press. Russell, M., Kang, G.E., & Uhteg, L. (1983). Evaluation of an educational program on the fetal alcohol syndrome for health professionals. Journal of Alcohol and Drug Depenndence, 29, 48-6 1. Smith, C.M., & Barnes, G.M. (1982). Alcohol and drug problems in medical patients: Comprehensive survey of physicians’ perceptions. New York Slate Journal of Medick, 82, 947-95 1. Sokol, R.J., & Clarren. S.K. (1989). Guidelines for use of terminology describing the impact of prenatal alcohol on the offspring. Alcoholism: Clinical W Experimental Research, 13, 597-598. Spohr, H.L.. & Steinhausen, H.C. (1984). Clinical, psychopathological and developmental aspects in children with fetal alcohol syndrome: A four-year follow-up study. In CIBA Foundation Symposium 105: Mechanisms of Alcohol Damage in U&o. London: Pitman. Weiner, L., McCarty, D., & Potter, D. (1989). A successful in-service program for health care professionals. Substance Abuse, 9, 20-28. Weiner, L., Rosett. H.L., & Edelin, K.C. (1982). Behavioral evaluation of fetal alcohol education for physicians. Alcoholism: Clinical W Experimental Research, 6, 230-233.

Pediatricians' perspectives on fetal alcohol syndrome.

Since the identification of fetal alcohol syndrome (FAS) in 1973, significant inroads have been made towards understanding the effects of alcohol on f...
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