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Childhood Obsessive–Compulsive Disorder in the NIMH MECA Study
Pergamon
Journal of Anxiety Disorders, Vol. 14, No. 6, 535–548, 2000 Copyright 2000 Elsevier Science Ltd Printed in the USA. All rights reserved 0887-6185/00 $–see front matter
PII S0887-6185(00)00048-7
Childhood Obsessive–Compulsive Disorder in the NIMH MECA Study: Parent Versus Child Identification of Cases Judith L. Rapoport, M.D. and Gale Inoff-Germain Child Psychiatry Branch, National Institute of Mental Health, Bethesda, Maryland, USA
Myrna M. Weissman, Ph.D. and Steven Greenwald Department of Psychiatry, College of Physicians and Surgeons, Columbia University and the New York State Psychiatric Institute, New York, USA
William E. Narrow, M.D., M.P.H. Office of the Director, National Institute of Mental Health, Bethesda, Maryland, USA
Peter S. Jensen, M.D. Department of Psychiatry, Division of Child Psychiatry, Columbia University College of Physicians and Surgeons, New York, USA
Benjamin B. Lahey, Ph.D. Department of Psychiatry, University of Chicago, Chicago, Illinois, USA
Glorisa Canino, Ph.D. Behavioral Sciences Research Institute, University of Puerto Rico, School of Medicine, Puerto Rico
Peter S. Jensen was formerly at the Office of the Director, National Institute of Mental Health, Bethesda, Maryland. Requests for reprints should be sent to Judith L. Rapoport, M.D., National Institute of Mental Health, Room 3N202, 10 Center Drive, MSC 1600, Bethesda, MD, 20892-1600. E-mail: [email protected]
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Abstract—Because as many as 50% of obsessive–compulsive disorder (OCD) cases have had onset by age 15, interest in its detection in childhood is strong. Clinical experience indicates that children often try to keep their OCD secret and that parental report may give marked underestimates. The authors examined the prevalence of childhood OCD in the NIMH Methods for the Epidemiology of Child and Adolescent Mental Disorders (MECA) Study, a four-site community survey which allowed comparison of both parent and child report of the child’s OCD and related symptoms and disorders. OCD cases, based on structured interviews (DISC-2.3 with DSM-III-R criteria) with 1,285 caretaker-child pairs, were identified separately for parent and child (aged 9 through 17) informants from the MECA database. Cases were then examined for demographic characteristics, for obsessive–compulsive symptoms and other diagnoses reported in cases “missed” by one reporter, and for comorbid disorders. Of a total of 35 (2.7%) identified cases, four (0.3%) were identified by the parent and 32 (2.5%) were identified by the child, with only one overlapping case. In general, when OCD cases were “missed” by one reporter, that reporter did not substitute another disorder. These findings support clinical data that children with OCD often hide their illness and underscore the importance of child interviews for its detection. 2000 Elsevier Science Ltd. All rights reserved. Keywords: Obsessive–compulsive disorder; Prevalence; Children; Adolescents; Parent report; Child report; Detection of cases
Because as many as 50% of obsessive–compulsive disorder (OCD) cases have had onset by age 15 (Rapoport, 1986), interest in detection of OCD in children is especially important. Childhood OCD is often recognized only when it is very severe or if the child reaches out for help, typically after years of suffering (Swedo, Rapoport, Leonard, Lenane, & Cheslow, 1989; Rapoport, 1989). Children seen clinically for other disorders will acknowledge OCD, when asked directly, but often admit keeping it a secret. The same phenomenon was found during recruitment for a NIMH study of childhood OCD. Most responses to advertisements for study participants were made by adolescents whose parents generally were unaware of their child’s problem and had to be taught to recognize OCD symptomatology (Swedo et al., 1989). Thus, clinical experience would suggest that parental report is likely to give marked underestimates of childhood OCD. This report examines the prevalence of childhood OCD in the NIMH Methods for the Epidemiology of Child and Adolescent Mental Disorders (MECA) Study (Lahey et al., 1996), a community survey which allowed comparison of both parent and child report of the child’s OCD and related symptoms. Since Flament, et al. (1988) study of OCD in a large community sample of adolescents, reports of rates of OCD in community samples of children and adolescents have varied, as summarized in Table 1 (See Flament et al. [1988] for a review of early studies.). As seen, most studies used only the child as the informant, and most are in general agreement with Epidemiologic Catchment Area [ECA; Karno, Golding, Sorenson, & Burnam, (1988)] data, indirectly supporting the importance of the child interview.
Valleni-Basile et al., 1994
Reinherz et al., 1993
Oregon Adolescent Depression Project Lewinsohn et al., 1993
Dunedin longitudinal study (New Zealand) Anderson et al., 1987 Douglass et al., 1995
Flament et al., 1988
Study
11 18
Grades 9–12
2-stage: 3283 children screened; 488 mother–child pairs Grades 7–9 Children were mostly age 12–15
1710 at Time 1; 14–18 1508 at Time 2 (1 yr later) 384 Mostly age 18
792 930
2-stage: 5596 screened; 356 interviewed
Sample Size & Age
DSM-III DSM-III-R
DSM-III
Diagnostic Criteria
CES-D K-SADS
DIS-III-R
DSM-III & CGAS ⬍61
DSM-III-R
K-SADS (modified) DSM-III-R LIFE DSM-III-R
DISC-C DIS (modified)
Leyton DICA
Instrument
1-month rate ⫽ 1.3% 6-month rate ⫽ 1.3% LPR ⫽ 2.1%
Time 1 PPR ⫽ .06% LPR ⫽ .53% Time 2 PPR ⫽ .00% LPR ⫽ .60%
1 yr prev ⫽ 0% 1 yr prev ⫽ 4%
Weighted current prev ⫽ 1% Weighted lifetime prev ⫽ 1.9%
Prevalence
Sx counted Weighted estimate ⫽ 2.95% if by either mother or child (continued)
Child
Child Child
Child Child
Child Child
Informant
TABLE 1 Recent Studies Reporting Prevalence Rates of OCD in Community Samples of Children and Adolescents
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DSM-III-R DSM-IV
Child Child
16–17 16–17
STSOB STSOBS
Informant
562 861
Diagnostic Criteria Parent Child Summary
Instrument
581 mother–child pairs
Sample Size & Age
PPR ⫽ point prevalence rate; LPR ⫽ lifetime prevalence rate LIFE ⫽ Longitudinal Interval Follow-up Evaluation STSOB ⫽ Schedule for Tourette’s Syndrome and Other Behavioral Disorders STSOBS ⫽ Schedule for Tourette’s Syndrome and Other Behavioral Syndromes Leyton ⫽ Leyton Obsessional Inventory-Child Version
Addy, personal communication, Oct. 23, 1997. Same project (but larger sample) as ValleniBasile (above) Israeli samples, screening for military Zohar et al., 1992 Apter et al., 1996
Study
TABLE 1—Continued
PPR ⫽ 3.56 Lifetime ⫽ 2.3
Weighted estimate ⫽ .28% Weighted estimate ⫽ 2.51% Weighted estimate ⫽ 2.89%
Prevalence
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The database available from the NIMH MECA study is the basis for this report. Cases of OCD were determined, and number of cases identified by parent and by child were compared. This database was of additional interest because it included comorbidity with other psychiatric disorders, including tic disorders, as well as various Axis III (medical) information which were of potential interest because of the links between childhood OCD and various post-infectious autoimmune disorders (Swedo, 1994; Swedo et al., 1997, 1998).
METHOD The NIMH MECA Study was a four-site project used to develop methods for surveys of mental disorder and service utilization in unscreened population-based samples of children and adolescents aged 9 through 17 years. As part of the project, a total of 1,285 pairs of youths and their adult caretakers (90% were the biological mother) were administered a computer-assisted version of the NIMH Diagnostic Interview Schedule for Children (DISC), Version 2.3 (Shaffer et al., 1996; Schwab-Stone et al., 1996). Probability household samples of youths came from geographic areas near Columbia University, Emory University, the University of Puerto Rico, and Yale University. (The probability samples were drawn to be representative of their own areas, not the United States in general.) The parent and child versions of the DISC were administered in the home by lay interviewers during 1991–2. Interviews of the two informants were conducted by different interviewers. After the procedure had been fully explained, written informed consent was obtained from the parent and written assent was obtained from the child. As described in Lahey et al.’s (1996) broader report on the project’s background and methodology, the interviewers had received 10 to 12 days training for the broader MECA project prior to the first field interviews, with additional sessions for selected interviewers after the study began. Further, as described in Shaffer et al. (1996), administration of the interviews was simplified by use of a computerized version of the DISC-2.3. Interviewers read questions from the display of a laptop computer and entered responses to the questions. The computer program took into account contingency rules and eliminated the need for recall or tally sheets. Scoring of the interviews was by computer using algorithms constructed for DSM-III-R diagnoses for the current time frame (“past 6 months”) as described in Shaffer et al. (1996). All diagnoses were coded without hierarchical exclusions. Diagnostic interviews covered: anxiety (simple phobia, social phobia, panic disorder, agoraphobia, separation anxiety, avoidant disorder, overanxious disorder, OCD, generalized anxiety disorder), mood (major depressive disorder, dysthymia, mania, hypomania), disruptive disorder (attention deficit-hyperactivity, oppositional/defiant, conduct), substance abuse/dependence (alcohol, marijuana, other substances), miscellaneous disorders
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(anorexia and bulemia nervosa, tic disorders, elimination disorders) and a psychosis screen. This report examines diagnoses of OCD (obsessions and/ or compulsions) and comorbid disorders determined separately for parent and child reports. Unfortunately, none of the psychometric studies of the DISC 2.3 reported on the reliability or validity for OCD, for either parent or child interviews, because of its low rate. However, test-retest reliability of the parent and child versions of the DISC have been tested in both community and clinical samples (Jensen et al., 1995), and the concordance of the DISC-generated diagnoses with clinician-based diagnoses also has been assessed (Schwab-Stone et al., 1996). In general, the results of these studies showed moderate to very good agreement between first and second administration of the instrument and between the lay interviewer and clinician diagnosis for most diagnostic categories. Reliability and validity coefficients tended to be better for parent versus child reports and in the clinical versus the community sample. Analyses Cases were examined for demographic characteristics, for severity, for the obsessive–compulsive symptoms and other diagnoses reported by parent or child in cases “missed” by one informant, and for pattern of comorbidity. In addition, an attempt was made to scrutinize the Axis III (medical) information to see if any association with infections or any other medical condition was seen.
RESULTS Of the 1,285 pairs of youths and their caretakers, a total of 35 (2.7%) cases were identified in 1991–2 as having OCD based on DSM-III-R criteria. Four (0.3%) OCD cases were identified on the basis of parent report, and 32 (2.5%) were identified by child report, with only one overlapping case in which parent and child reports concurred. Corresponding age-corrected prevalence rates were: total, 1.72%; parent report, 0.02%; child report, 1.62%. The 35 identified cases consisted of 17 (49%) boys (M age ⫽ 13.18 years, SD ⫽ 3.09) and 18 (51%) girls (M age ⫽ 13.22 years, SD ⫽ 2.26). The group of OCD cases was similar to the larger MECA sample which was 53% boys and 47% girls, with 10–12% of the children at each year of age. The OCD cases also were from all four sites (Emory ⫽ 37%, Yale ⫽ 26%, Columbia ⫽ 14%, Puerto Rico ⫽ 23%), with racial composition being 31% White, 31% Black, 26% Hispanic, and 11% “Other.” Earliest age at onset of current symptoms was: boys, M age ⫽ 7.18 years, SD ⫽ 3.59; girls, M age ⫽ 10.78 years, SD ⫽ 3.12. A t-test for independent means [t ⫽ 2.68 (df ⫽ 33), p ⫽ .01, two-tailed] indicated that boys had an earlier onset.
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Diagnosis of OCD For each case, scores were examined on items for each symptom, as well as for the additional DSM-III-R criteria for OCD involving duration and impairment attributable to the diagnosis-specific symptoms. A symptom was considered present if there were positive responses to the stem question(s) which involved the nature and frequency of the behavior and to two or more contingent questions or probes (e.g., “feels uneasy if doesn’t do . . .”, “thinks bad things will happen if doesn’t do . . .”, “wants to stop . . . but can’t”). No case appeared to be marginal. Were Cases “Missed” by One Reporter “Close” to Getting an OCD Diagnosis Based on That Person’s Report? As detailed below, cases “missed” by children were likely to be “close” to getting an OCD diagnosis based on child report. Cases “missed” by parents, however, were likely to be clear misses. Cases “missed” by the parent. Five (16%) of the 31 child-only identified cases came close to getting a diagnosis of OCD based on parent report; one failed to meet duration criteria, one had insufficient impairment, and three failed to meet both duration and impairment criteria. Conservatively, this left 26 (26/35 total cases ⫽ 74%) in which the parent’s report clearly missed the OCD diagnosis. Cases “missed” by the child. Two (67%) of the three parent-only identified cases had child-reported OCD symptoms which did not meet duration and impairment criteria; the other had no child-reported OCD symptoms. Thus, there was only one (1/35 total cases ⫽ 3%) identified case in which the child clearly missed the OCD diagnosis. Were Cases “Missed” by One Reporter Given “Substitute” Diagnoses Based on That Person’s Report (Indicating Awareness of Serious Problems of Some Type)? As detailed below, “missed” cases generally had no diagnosis. Therefore, for most cases, there was no evidence of a substitute diagnosis. For the small number of “missed” cases that did get another diagnosis, mood and other anxiety disorders were most frequent. Cases “missed” by the parent. Only six (19%) of the 31 child-only identified cases received any diagnosis as a function of parent report. Four of these had major depressive disorder (MDD) as a parent-identified diagnosis. Other
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diagnoses the parents identified in these six cases were: social phobia (2 cases), separation anxiety (1), agoraphobia (1), oppositional disorder (2), conduct disorder (2), and attention-deficit hyperactivity disorder (ADHD) (1). It is notable that (based on parent and/or child report) 11 of the 31 (35%) of these child-only identified cases had seen a mental health professional for one or more of their problems; in spite of this prior professional contact, current OCD was not identified. Cases “missed” by the child. One (33%) of these three children’s interviews resulted in a diagnosis (overanxious disorder).
Comorbidity As detailed below, comorbidity with OCD was generally as expected, with OCD cases often having mood and other anxiety disorders as well. Parent-only identified cases. Two of these three cases had other parent-identified diagnoses: One had simple phobia and social phobia, and the other had overanxious disorder, generalized anxiety disorder, agoraphobia, separation anxiety, MDD, and dysthymia. Child-only identified cases. Only six of 30 cases (20%) (missing data for one) had no other child-identified comorbid disorder. Anxiety disorders were most prominent: simple phobia (4/31 ⫽ 13%), social phobia (8/31 ⫽ 26%), agoraphobia (5/31 ⫽ 16%), separation anxiety (3/31 ⫽ 10%), avoidant disorder (4/31 ⫽ 13%), overanxious disorder (12/30 ⫽ 40%), and generalized anxiety disorder (4/30 ⫽ 13%). As expected, although 17 of the 31 (55%) children reported other anxiety problems (i.e., anxiety problems other than OCD) meeting diagnostic criteria, only three of these 17 (18%) had parent-identified anxiety diagnoses. As also reported for childhood OCD (Swedo et al., 1989), mood disorders were common: major depressive disorder (MDD) (7/28 ⫽ 25%) and dysthymia (3/31 ⫽ 10%). Unexpectedly, 6/30 (20%) met criteria for mania. Disruptive disorders were: ADHD (3/30 ⫽ 10%), oppositional/defiant (3/30 ⫽ 10%), and conduct disorder (2/30 ⫽ 7%). However, there was only one case (1/31 ⫽ 3%) of comorbid tics. The agreed-upon OCD case. This child had five comorbid diagnoses identified by both parent and child: MDD, dysthymia, social phobia, overanxious disorder, and generalized anxiety. Three additional disorders were identified by the parent only: panic disorder, separation anxiety, and avoidance disorder.
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Medical problems. Variables assessing medical history were too general to examine the autoimmune hypothesis for some cases of childhood OCD.
DISCUSSION The prevalence of OCD in a four-site community-based sample of 1,285 children aged 9 through 17 was examined in terms of parent report and child report. Of a total of 35 (2.7%) identified cases, four (0.3%) were identified by the parent and 32 (2.5%) were identified by the child, with only one overlapping case. While rates based on child report are in general agreement with ECA data for adults (age 18⫹) (1.5% for 6-month prevalence across five sites [Karno et al., 1988]), rates based on parent report are especially low. However, caution should be exercised in interpreting the MECA rates in absolute terms because MECA samples reflected their own geographic areas, not the US in general. Regardless, our findings support clinical views that children with OCD often hide their illness and underscore the importance of interviews with the child for diagnosis of OCD. When parents “missed” OCD cases, they were not substituting another disorder. This parallels findings of Weissman et al. (1987) for childhood MDD. More globally, there has been increasing recognition that detection of internalizing (versus externalizing) problems require child report, especially with older children (Rubio-Stipec et al., 1994; Renouf & Kovacs, 1994; Reich & Earls, 1987). A higher degree of comorbidity of OCD with other (especially other anxiety) disorders also was obtained through child report. Thus, it is not being asserted that attempting to keep one’s disorder secret is unique to OCD. However, documentation of the phenomenon for childhood OCD has been lacking. Child report often has been ignored in study designs in the past because of a concern about reliability or validity of the report. However, once the child is 10 or older, child report on the DISC is more like an adult’s (Edelbrock, Costello, Dulcan, Kalas, & Conover, 1985). Of the 31 child-only identified cases in the present study, the youngest were nine-year-olds (n ⫽ 4), and there was one 10-year-old. The rest (84%) were 11–17. Of course, it is still possible that rates based on child report are inflated. Unfortunately, none of the psychometric studies of the DISC 2.3 reported on the reliability or validity for OCD, for either parent or child interviews, because of its low rate. One concern on which we could shed some light involves two open-ended items for “other” obsessions or “other” compulsions (e.g., “Are there any other things I haven’t asked you about that you have to do over and over again or a certain number of times?”). In each case, an example was asked for, and contingent probes followed affirmative responses. However, we considered it possible that the lay interviewer’s evaluation of the example might have contributed to error in the data. To examine the extent to which this
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potential error could have influenced the prevalence rates, we reran the algorithm, omitting these two items. The number of child-identified OCD cases stayed the same (i.e., 32); the number based on parent report dropped from four to three. Additional checks were made on the “caseness” of the child-only identified OCD cases. First, although endorsement of only one diagnosis-specific impairment item (out of six for compulsions and four for obsessions) was necessary to determine a case, the mean and modal number of items actually endorsed was 4.06 and 3, respectively. Only one (3%) of these 31 children endorsed only one item. Moreover, one of the most objective items (asking if the compulsion took an hour or more of the child’s time each day) was answered affirmatively by 20 (65%) of the children. Second, although there are limits to the usefulness of a global impairment measure in indexing impairment due to a specific diagnosis, especially when the child has multiple diagnoses; this approach was used to complement the other information. Based on interviewer ratings reflecting the child’s report and an unpublished revision by Setterberg, Bird, Gould, Shaffer, and Fisher of the Children’s Global Assessment Scale (CGAS; Shaffer et al., 1983), 20 (65%) of the 31 child-only identified cases had scores of 70 or lower, a cutoff sometimes considered useful (Shaffer et al., 1996). A recent epidemiological study of OCD involving adults (Stein, Forde, Anderson, & Walker, 1997) offers caution regarding rates determined by lay interviewers in general, suggesting that clinical reappraisal dramatically lowers the number of cases. We agree with Stein and colleagues that caution should be exerted in interpreting data determined by lay interviewers, and, therefore, the results presented here should not be viewed as conclusive. However, it should be noted that the overall validity of the diagnoses in this report also is supported by the early age of onset for males and the pattern of comorbidity (Swedo et al., 1989; Flament, Rapoport, Berg, Kilts, 1985). Further, the point to be emphasized is that very different prevalence estimates would be obtained from parent reporters alone. Except for the unpublished data graciously supplied by C. Addy upon request, the studies reviewed in Table 1 do not allow for comparison of parent and child reports. However, Addy’s rates provide strong additional support for our finding of parents typically being unaware of their child’s OCD. Only one case of OCD comorbid with tics was identified in this sample. Some studies have found considerable overlap of these disorders (Leonard et al., 1993; Zohar et al., 1992). It does not appear that the low comorbidity was due to ascertainment bias because the prevalence of tics (any tic disorder) in the total MECA sample was 3.04%; the rate was 1.09% when impairment criteria were added. Rates of tics vary considerably across reports, but these are within the range found (Woods, Miltenberger, & Flach, 1996; Tanner & Goldman, 1997). Additionally, it should be recalled that ours is a community
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sample where, in contrast to clinical samples, comorbidity tends to be lower and to reflect cases which are less severe (Anderson, Williams, McGee, & Silva, 1987; Bird, Gould, & Staghezza; 1993; Zoccolillo, 1992). In addition, our proportion of OCD cases who are Black is higher than would be expected based on ECA data (Karno et al., 1988) but is similar to estimates from Valleni-Basile et al. (1994). Considering that the total MECA sample had 15% Blacks and 51% Whites, having the same percentage of Blacks and Whites (31% each) comprise our 35 OCD cases is noteworthy. Our mean age at onset of current symptoms (7.18 for boys and 10.78 for girls) is in line with numerous reports on child, rather than adult, samples. Studies of adults, of course, allow for the possibility of older age at onset and, thereby, a higher mean. In their two-stage epidemiological study of children, Flament et al. (1988) found that onset varied from 7 to 18 years. In Swedo et al.’s (1989) study of the clinical phenomenology of children with OCD, mean age at onset was 10.1 (⫾3.52) years, with seven of the 70 cases being ill before age seven. In a treatment study, Flament et al. (1985) found that some children had shown symptoms as early as age three. Further, it should be noted that the age at onset used in the MECA study is onset of current symptoms. Age at onset of symptoms generally is considerably earlier than age when an OCD diagnosis may be made. The extent of child-reported comorbid mania in our OCD cases appears rather high, and there is considerable debate about the diagnosis of mania in childhood (Carlson, 2000). However, as all but one of these six cases were in the mid- to later-adolescent years, it is possible that these reports are valid. Having OCD is one of several diagnostic criteria for the recently described “pediatric autoimmune neuropsychiatric disorders (OCD and tics) associated with streptococcal infections” (PANDAS; Swedo, 1994). Because the MECA project included interview questions covering medical problems, we had hoped that the medical data on these OCD cases also might be examined in light of the autoimmune hypothesis for at least some cases of childhood OCD (Swedo, 1994). However, the relevant variables were inappropriate for this purpose (e.g., ear infections and tonsilitis were “picked up” only if they necessitated hospitalization). Our having only one OCD case with comorbid tics may indicate a low prevalence of the PANDAS type of disorder. However, because the psychiatric assessment covered only the past six months, there remains the possiblity that these OCD cases had had a tic disorder earlier in their lives. Future studies would benefit by inclusion of information to assess the Jones criteria for the diagnosis of rheumatic fever as well as information for the diagnosis of Sydenham’s chorea (Swedo et al., 1997, 1998). The MECA Program is an epidemiological methodology study performed by four independent research teams in collaboration with staff of the Division of Clinical Research, which was reorganized in 1992 with components now in the Division of Epidemiology and Services Research and the Division of
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Clinical and Treatment Research, of the NIMH, Rockville, MD. The NIMH Principal Collaborators are Darrel A. Regier, M.D., M.P.H., Ben Z. Locke, M.S.P.H., Peter S. Jensen, M.D., William E. Narrow, M.D., M.P.H., Donald S. Rae, M.A., John E. Richters, Ph.D., Karen H. Bourdon, M.A., and Margaret T. Roper, M.S. The NIMH Project Officer was William J. Huber. The Principal Investigators and Coinvestigators from the four sites are as follows: Emory University, Atlanta, U01 MH46725: Mina K. Dulcan, M.D., Benjamin B. Lahey, Ph.D., Donna J. Brogan, Ph.D., Sherryl H. Goodman, Ph.D., and Elaine W. Flagg, Ph.D.; Research Foundation for Mental Hygiene at New York State Psychiatric Institute, New York, U01 MH46718: Hector R. Bird, M.D., David Shaffer, M.D., Myrna Weissman, Ph.D., Patricia Cohen, Ph.D., Denise Kandel, Ph.D., Christina Hoven, Ph.D., Mark Davies, M.P.H., Madelyn S. Gould, Ph.D., and Agnes Whitaker, M.D.; Yale University, New Haven, CT, U01 MH46717: Mary Schwab-Stone, M.D., Philip J. Leaf, Ph.D., Sarah Horwitz, Ph.D., and Judith Lichtman, M.P.H.; University of Puerto Rico, San Juan, U01 MH46732: Glorisa Canino, Ph.D., Maritza Rubio-Stipec, M.A., Milagros Bravo, Ph.D., Margarita Alegria, Ph.D., Julio Ribera, Ph.D., Sara Huertas, M.D., Michel Woodbury, M.D., and Jose Bauermeister, Ph.D.
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(1995). Test-retest reliability of the Diagnostic Interview Schedule for Children (DISC 2.1). Archives of General Psychiatry, 52, 61–71. Karno, M., Golding, J. M., Sorenson, S. B., & Burnam, A. (1988). The epidemiology of obsessivecompulsive disorder in five US communities. Archives of General Psychiatry, 45, 1094–1099. Lahey, B. B., Flagg, E. W., Bird, H. R., Schwab-Stone, M. E., Canino, G., Dulcan, M. K., Leaf, P. J., Davies, M., Brogan, D., Bourdon, K., Horwitz, S. M., Rubio-Stipec, M., Freeman, D. H., Lichtman, J. H., Shaffer, D., Goodman, S. H., Narrow, W. E., Weissman, M. M., Kandel, D. B., Jensen, P. S., Richters, J. E., & Regier, D. A. (1996). The NIMH methods for the epidemiology of child and adolescent mental disorders (MECA) study: Background and methodology. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 855–864. Leonard, H. L., Swedo, S. S., Lenane, M. C., Rettew, D. C., Hamburger, S. D., Bartko, J. J., & Rapoport, J. L. (1993). A 2- to 7-year follow-up study of 54 obsessive-compulsive children and adolescents. Archives of General Psychiatry, 50, 429–439. Lewinsohn, P. M., Hops, H., Roberts, R. E., Seeley, J. R., & Andrews, J. A. (1993). Adolescent psychopathology: I. Prevalence and incidence of depression and other DSM-III-R disorders in high school students. Journal of Abnormal Psychology, 102, 133–144. Rapoport, J. L. (1986). Childhood obsessive compulsive disorder. Journal of Child Psychology and Psychiatry, 27, 289–296. Rapoport, J. L. (1989). Obsessive-compulsive disorder in children and adolescents. Washington, DC: American Psychiatric Press. Reich, W. L., & Earls, F. (1987). Rules for making psychiatric diagnoses in children on the basis of multiple sources of information: Preliminary strategies. Journal of Abnormal Child Psychology, 10, 325–336. Reinherz, H. Z., Giaconia, R. M., Lefkowitz, E. S., Pakiz, B., & Frost, A. K. (1993). Prevalence of psychiatric disorders in a community population of older adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 32, 369–377. Renouf, A. G., & Kovacs, M. (1994). Concordance between mothers’ reports and children’s selfreports of depressive symptoms: A longitudinal study. Journal of the American Academy of Child and Adolescent Psychiatry, 33, 208–216. Rubio-Stipec, M., Canino, G., Shrout, P., Dulcan, M., Freeman, D., & Bravos, M. (1994). Psychometric properties of parents and children as informants in child psychiatry epidemiology with the Spanish Diagnostic Interview Schedule for Children (DISC.2). Journal of Abnormal Child Psychology, 22, 703–720. Schwab-Stone, M. E., Shaffer, D., Dulcan, M. K., Jensen, P. S., Fisher, P., Bird, H. R., Goodman, S. H., Lahey, B. B., Lichtman, J. H., Canino, G., Rubio-Stipec, M., & Rae, D. S. (1996). Criterion validity of the NIMH Diagnostic Interview Schedule for Children Version 2.3 (DISC2.3). Journal of the American Academy of Child and Adolescent Psychiatry, 35, 878–888. Shaffer, D., Fisher, P., Dulcan, M. K., Davies, M., Piacentini, J., Schwab-Stone, M. E., Lahey, B. B., Bourdon, K., Jensen, P. S., Bird, H. R., Canino, G., & Regier, D. A. (1996). The NIMH Diagnostic Interview Schedule for Children Version 2.3 (DISC-2.3): Description, acceptability, prevalence rates, and performance in the MECA study. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 865–877. Shaffer, D., Gould, M. S., Brasic, J., Ambrosini, P., Fisher, P., Bird, H., & Aluwahlia, S. (1983). The Children’s Global Assessment Scale. Archives of General Psychiatry, 40, 1228–1231. Stein, M. B., Forde, D. R., Anderson, G., & Walker, J. R. (1997). Obsessive-compulsive disorder in the community: An epidemiologic survey with clinical reappraisal. The American Journal of Psychiatry, 154, 1120–1126. Swedo, S. E. (1994). Sydenham’s chorea. A model for childhood autoimmune neuropsychiatric disorders. Journal of the American Medical Association, 272, 1788–1791. Swedo, S. E., Leonard, H. L., Garvey, M., Mittleman, B., Allen, A. J., Perlmutter, S., Lougee, L., Dow, S., Zamkoff, J., & Dubbert, B. K. (1998). Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: Clinical description of the first fifty cases. The American Journal of Psychiatry, 155, 264–271.
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Swedo, S. E., Leonard, H. L., Mittleman, B. B., Allen, A. J., Rapoport, J. L., Dow, S. P., Kanter, M. E., Chapman, F., & Zabriskie, J. (1997). Identification of children with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections by a marker associated with rheumatic fever. The American Journal of Psychiatry, 154, 110–112. Swedo, S. E., Rapoport, J. L., Leonard, H., Lenane, M., & Cheslow, D. (1989). Obsessivecompulsive disorder in children and adolesents. Clinical phenomenology of 70 consecutive cases. Archives of General Psychiatry, 46, 335–341. Tanner, C. M., & Goldman, S. M. (1997). Epidemiology of Tourette syndrome. Neurological Clinics of North America, 15, 395–402. Valleni-Basile, L. A., Garrison, C. Z., Jackson, K. L., Waller, J. L., McKeown, R. E., Addy, C. L., & Cuffe, S. P. (1994). Frequency of obsessive-compulsive disorder in a community sample of young adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 33, 782–791. Weissman, M. M., Wickramaratne, P., Warner, V., John, K., Prusoff, B. A., Merikangas, K. R., & Gammon, G. D. (1987) Assessing psychiatric disorders in children: Discrepancies between mothers’ and children’s reports. Archives of General Psychiatry, 44, 747–753. Woods, D. W., Miltenberger, R. G., & Flach, A. D. (1996). Habits, tics, and stuttering: Prevalence and relation to anxiety and somatic awareness. Behavior Modification, 20, 216–225. Zoccolillo, M. (1992). Co-occurrence of conduct disorder and its adult outcomes with depressive and anxiety disorders: A review. Journal of the American Academy of Child and Adolescent Psychiatry, 31, 547–556. Zohar, A. H., Ratzoni, G., Pauls, D. L., Apter, A., Bleich, A., Kron, S., Rappaport, M., Weizman, A., & Cohen, D. J. (1992). An epidemiological study of obsessive-compulsive disorder and related disorders in Israeli adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 31, 1057–1061.
Journal of Anxiety Disorders, Vol. 14, No. 6, 535–548, 2000 Copyright 2000 Elsevier Science Ltd Printed in the USA. All rights reserved 0887-6185/00 $–see front matter
PII S0887-6185(00)00048-7
Childhood Obsessive–Compulsive Disorder in the NIMH MECA Study: Parent Versus Child Identification of Cases Judith L. Rapoport, M.D. and Gale Inoff-Germain Child Psychiatry Branch, National Institute of Mental Health, Bethesda, Maryland, USA
Myrna M. Weissman, Ph.D. and Steven Greenwald Department of Psychiatry, College of Physicians and Surgeons, Columbia University and the New York State Psychiatric Institute, New York, USA
William E. Narrow, M.D., M.P.H. Office of the Director, National Institute of Mental Health, Bethesda, Maryland, USA
Peter S. Jensen, M.D. Department of Psychiatry, Division of Child Psychiatry, Columbia University College of Physicians and Surgeons, New York, USA
Benjamin B. Lahey, Ph.D. Department of Psychiatry, University of Chicago, Chicago, Illinois, USA
Glorisa Canino, Ph.D. Behavioral Sciences Research Institute, University of Puerto Rico, School of Medicine, Puerto Rico
Peter S. Jensen was formerly at the Office of the Director, National Institute of Mental Health, Bethesda, Maryland. Requests for reprints should be sent to Judith L. Rapoport, M.D., National Institute of Mental Health, Room 3N202, 10 Center Drive, MSC 1600, Bethesda, MD, 20892-1600. E-mail: [email protected]
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Abstract—Because as many as 50% of obsessive–compulsive disorder (OCD) cases have had onset by age 15, interest in its detection in childhood is strong. Clinical experience indicates that children often try to keep their OCD secret and that parental report may give marked underestimates. The authors examined the prevalence of childhood OCD in the NIMH Methods for the Epidemiology of Child and Adolescent Mental Disorders (MECA) Study, a four-site community survey which allowed comparison of both parent and child report of the child’s OCD and related symptoms and disorders. OCD cases, based on structured interviews (DISC-2.3 with DSM-III-R criteria) with 1,285 caretaker-child pairs, were identified separately for parent and child (aged 9 through 17) informants from the MECA database. Cases were then examined for demographic characteristics, for obsessive–compulsive symptoms and other diagnoses reported in cases “missed” by one reporter, and for comorbid disorders. Of a total of 35 (2.7%) identified cases, four (0.3%) were identified by the parent and 32 (2.5%) were identified by the child, with only one overlapping case. In general, when OCD cases were “missed” by one reporter, that reporter did not substitute another disorder. These findings support clinical data that children with OCD often hide their illness and underscore the importance of child interviews for its detection. 2000 Elsevier Science Ltd. All rights reserved. Keywords: Obsessive–compulsive disorder; Prevalence; Children; Adolescents; Parent report; Child report; Detection of cases
Because as many as 50% of obsessive–compulsive disorder (OCD) cases have had onset by age 15 (Rapoport, 1986), interest in detection of OCD in children is especially important. Childhood OCD is often recognized only when it is very severe or if the child reaches out for help, typically after years of suffering (Swedo, Rapoport, Leonard, Lenane, & Cheslow, 1989; Rapoport, 1989). Children seen clinically for other disorders will acknowledge OCD, when asked directly, but often admit keeping it a secret. The same phenomenon was found during recruitment for a NIMH study of childhood OCD. Most responses to advertisements for study participants were made by adolescents whose parents generally were unaware of their child’s problem and had to be taught to recognize OCD symptomatology (Swedo et al., 1989). Thus, clinical experience would suggest that parental report is likely to give marked underestimates of childhood OCD. This report examines the prevalence of childhood OCD in the NIMH Methods for the Epidemiology of Child and Adolescent Mental Disorders (MECA) Study (Lahey et al., 1996), a community survey which allowed comparison of both parent and child report of the child’s OCD and related symptoms. Since Flament, et al. (1988) study of OCD in a large community sample of adolescents, reports of rates of OCD in community samples of children and adolescents have varied, as summarized in Table 1 (See Flament et al. [1988] for a review of early studies.). As seen, most studies used only the child as the informant, and most are in general agreement with Epidemiologic Catchment Area [ECA; Karno, Golding, Sorenson, & Burnam, (1988)] data, indirectly supporting the importance of the child interview.
Valleni-Basile et al., 1994
Reinherz et al., 1993
Oregon Adolescent Depression Project Lewinsohn et al., 1993
Dunedin longitudinal study (New Zealand) Anderson et al., 1987 Douglass et al., 1995
Flament et al., 1988
Study
11 18
Grades 9–12
2-stage: 3283 children screened; 488 mother–child pairs Grades 7–9 Children were mostly age 12–15
1710 at Time 1; 14–18 1508 at Time 2 (1 yr later) 384 Mostly age 18
792 930
2-stage: 5596 screened; 356 interviewed
Sample Size & Age
DSM-III DSM-III-R
DSM-III
Diagnostic Criteria
CES-D K-SADS
DIS-III-R
DSM-III & CGAS ⬍61
DSM-III-R
K-SADS (modified) DSM-III-R LIFE DSM-III-R
DISC-C DIS (modified)
Leyton DICA
Instrument
1-month rate ⫽ 1.3% 6-month rate ⫽ 1.3% LPR ⫽ 2.1%
Time 1 PPR ⫽ .06% LPR ⫽ .53% Time 2 PPR ⫽ .00% LPR ⫽ .60%
1 yr prev ⫽ 0% 1 yr prev ⫽ 4%
Weighted current prev ⫽ 1% Weighted lifetime prev ⫽ 1.9%
Prevalence
Sx counted Weighted estimate ⫽ 2.95% if by either mother or child (continued)
Child
Child Child
Child Child
Child Child
Informant
TABLE 1 Recent Studies Reporting Prevalence Rates of OCD in Community Samples of Children and Adolescents
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DSM-III-R DSM-IV
Child Child
16–17 16–17
STSOB STSOBS
Informant
562 861
Diagnostic Criteria Parent Child Summary
Instrument
581 mother–child pairs
Sample Size & Age
PPR ⫽ point prevalence rate; LPR ⫽ lifetime prevalence rate LIFE ⫽ Longitudinal Interval Follow-up Evaluation STSOB ⫽ Schedule for Tourette’s Syndrome and Other Behavioral Disorders STSOBS ⫽ Schedule for Tourette’s Syndrome and Other Behavioral Syndromes Leyton ⫽ Leyton Obsessional Inventory-Child Version
Addy, personal communication, Oct. 23, 1997. Same project (but larger sample) as ValleniBasile (above) Israeli samples, screening for military Zohar et al., 1992 Apter et al., 1996
Study
TABLE 1—Continued
PPR ⫽ 3.56 Lifetime ⫽ 2.3
Weighted estimate ⫽ .28% Weighted estimate ⫽ 2.51% Weighted estimate ⫽ 2.89%
Prevalence
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The database available from the NIMH MECA study is the basis for this report. Cases of OCD were determined, and number of cases identified by parent and by child were compared. This database was of additional interest because it included comorbidity with other psychiatric disorders, including tic disorders, as well as various Axis III (medical) information which were of potential interest because of the links between childhood OCD and various post-infectious autoimmune disorders (Swedo, 1994; Swedo et al., 1997, 1998).
METHOD The NIMH MECA Study was a four-site project used to develop methods for surveys of mental disorder and service utilization in unscreened population-based samples of children and adolescents aged 9 through 17 years. As part of the project, a total of 1,285 pairs of youths and their adult caretakers (90% were the biological mother) were administered a computer-assisted version of the NIMH Diagnostic Interview Schedule for Children (DISC), Version 2.3 (Shaffer et al., 1996; Schwab-Stone et al., 1996). Probability household samples of youths came from geographic areas near Columbia University, Emory University, the University of Puerto Rico, and Yale University. (The probability samples were drawn to be representative of their own areas, not the United States in general.) The parent and child versions of the DISC were administered in the home by lay interviewers during 1991–2. Interviews of the two informants were conducted by different interviewers. After the procedure had been fully explained, written informed consent was obtained from the parent and written assent was obtained from the child. As described in Lahey et al.’s (1996) broader report on the project’s background and methodology, the interviewers had received 10 to 12 days training for the broader MECA project prior to the first field interviews, with additional sessions for selected interviewers after the study began. Further, as described in Shaffer et al. (1996), administration of the interviews was simplified by use of a computerized version of the DISC-2.3. Interviewers read questions from the display of a laptop computer and entered responses to the questions. The computer program took into account contingency rules and eliminated the need for recall or tally sheets. Scoring of the interviews was by computer using algorithms constructed for DSM-III-R diagnoses for the current time frame (“past 6 months”) as described in Shaffer et al. (1996). All diagnoses were coded without hierarchical exclusions. Diagnostic interviews covered: anxiety (simple phobia, social phobia, panic disorder, agoraphobia, separation anxiety, avoidant disorder, overanxious disorder, OCD, generalized anxiety disorder), mood (major depressive disorder, dysthymia, mania, hypomania), disruptive disorder (attention deficit-hyperactivity, oppositional/defiant, conduct), substance abuse/dependence (alcohol, marijuana, other substances), miscellaneous disorders
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(anorexia and bulemia nervosa, tic disorders, elimination disorders) and a psychosis screen. This report examines diagnoses of OCD (obsessions and/ or compulsions) and comorbid disorders determined separately for parent and child reports. Unfortunately, none of the psychometric studies of the DISC 2.3 reported on the reliability or validity for OCD, for either parent or child interviews, because of its low rate. However, test-retest reliability of the parent and child versions of the DISC have been tested in both community and clinical samples (Jensen et al., 1995), and the concordance of the DISC-generated diagnoses with clinician-based diagnoses also has been assessed (Schwab-Stone et al., 1996). In general, the results of these studies showed moderate to very good agreement between first and second administration of the instrument and between the lay interviewer and clinician diagnosis for most diagnostic categories. Reliability and validity coefficients tended to be better for parent versus child reports and in the clinical versus the community sample. Analyses Cases were examined for demographic characteristics, for severity, for the obsessive–compulsive symptoms and other diagnoses reported by parent or child in cases “missed” by one informant, and for pattern of comorbidity. In addition, an attempt was made to scrutinize the Axis III (medical) information to see if any association with infections or any other medical condition was seen.
RESULTS Of the 1,285 pairs of youths and their caretakers, a total of 35 (2.7%) cases were identified in 1991–2 as having OCD based on DSM-III-R criteria. Four (0.3%) OCD cases were identified on the basis of parent report, and 32 (2.5%) were identified by child report, with only one overlapping case in which parent and child reports concurred. Corresponding age-corrected prevalence rates were: total, 1.72%; parent report, 0.02%; child report, 1.62%. The 35 identified cases consisted of 17 (49%) boys (M age ⫽ 13.18 years, SD ⫽ 3.09) and 18 (51%) girls (M age ⫽ 13.22 years, SD ⫽ 2.26). The group of OCD cases was similar to the larger MECA sample which was 53% boys and 47% girls, with 10–12% of the children at each year of age. The OCD cases also were from all four sites (Emory ⫽ 37%, Yale ⫽ 26%, Columbia ⫽ 14%, Puerto Rico ⫽ 23%), with racial composition being 31% White, 31% Black, 26% Hispanic, and 11% “Other.” Earliest age at onset of current symptoms was: boys, M age ⫽ 7.18 years, SD ⫽ 3.59; girls, M age ⫽ 10.78 years, SD ⫽ 3.12. A t-test for independent means [t ⫽ 2.68 (df ⫽ 33), p ⫽ .01, two-tailed] indicated that boys had an earlier onset.
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Diagnosis of OCD For each case, scores were examined on items for each symptom, as well as for the additional DSM-III-R criteria for OCD involving duration and impairment attributable to the diagnosis-specific symptoms. A symptom was considered present if there were positive responses to the stem question(s) which involved the nature and frequency of the behavior and to two or more contingent questions or probes (e.g., “feels uneasy if doesn’t do . . .”, “thinks bad things will happen if doesn’t do . . .”, “wants to stop . . . but can’t”). No case appeared to be marginal. Were Cases “Missed” by One Reporter “Close” to Getting an OCD Diagnosis Based on That Person’s Report? As detailed below, cases “missed” by children were likely to be “close” to getting an OCD diagnosis based on child report. Cases “missed” by parents, however, were likely to be clear misses. Cases “missed” by the parent. Five (16%) of the 31 child-only identified cases came close to getting a diagnosis of OCD based on parent report; one failed to meet duration criteria, one had insufficient impairment, and three failed to meet both duration and impairment criteria. Conservatively, this left 26 (26/35 total cases ⫽ 74%) in which the parent’s report clearly missed the OCD diagnosis. Cases “missed” by the child. Two (67%) of the three parent-only identified cases had child-reported OCD symptoms which did not meet duration and impairment criteria; the other had no child-reported OCD symptoms. Thus, there was only one (1/35 total cases ⫽ 3%) identified case in which the child clearly missed the OCD diagnosis. Were Cases “Missed” by One Reporter Given “Substitute” Diagnoses Based on That Person’s Report (Indicating Awareness of Serious Problems of Some Type)? As detailed below, “missed” cases generally had no diagnosis. Therefore, for most cases, there was no evidence of a substitute diagnosis. For the small number of “missed” cases that did get another diagnosis, mood and other anxiety disorders were most frequent. Cases “missed” by the parent. Only six (19%) of the 31 child-only identified cases received any diagnosis as a function of parent report. Four of these had major depressive disorder (MDD) as a parent-identified diagnosis. Other
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diagnoses the parents identified in these six cases were: social phobia (2 cases), separation anxiety (1), agoraphobia (1), oppositional disorder (2), conduct disorder (2), and attention-deficit hyperactivity disorder (ADHD) (1). It is notable that (based on parent and/or child report) 11 of the 31 (35%) of these child-only identified cases had seen a mental health professional for one or more of their problems; in spite of this prior professional contact, current OCD was not identified. Cases “missed” by the child. One (33%) of these three children’s interviews resulted in a diagnosis (overanxious disorder).
Comorbidity As detailed below, comorbidity with OCD was generally as expected, with OCD cases often having mood and other anxiety disorders as well. Parent-only identified cases. Two of these three cases had other parent-identified diagnoses: One had simple phobia and social phobia, and the other had overanxious disorder, generalized anxiety disorder, agoraphobia, separation anxiety, MDD, and dysthymia. Child-only identified cases. Only six of 30 cases (20%) (missing data for one) had no other child-identified comorbid disorder. Anxiety disorders were most prominent: simple phobia (4/31 ⫽ 13%), social phobia (8/31 ⫽ 26%), agoraphobia (5/31 ⫽ 16%), separation anxiety (3/31 ⫽ 10%), avoidant disorder (4/31 ⫽ 13%), overanxious disorder (12/30 ⫽ 40%), and generalized anxiety disorder (4/30 ⫽ 13%). As expected, although 17 of the 31 (55%) children reported other anxiety problems (i.e., anxiety problems other than OCD) meeting diagnostic criteria, only three of these 17 (18%) had parent-identified anxiety diagnoses. As also reported for childhood OCD (Swedo et al., 1989), mood disorders were common: major depressive disorder (MDD) (7/28 ⫽ 25%) and dysthymia (3/31 ⫽ 10%). Unexpectedly, 6/30 (20%) met criteria for mania. Disruptive disorders were: ADHD (3/30 ⫽ 10%), oppositional/defiant (3/30 ⫽ 10%), and conduct disorder (2/30 ⫽ 7%). However, there was only one case (1/31 ⫽ 3%) of comorbid tics. The agreed-upon OCD case. This child had five comorbid diagnoses identified by both parent and child: MDD, dysthymia, social phobia, overanxious disorder, and generalized anxiety. Three additional disorders were identified by the parent only: panic disorder, separation anxiety, and avoidance disorder.
PARENT/CHILD OCD IDENTIFICATION
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Medical problems. Variables assessing medical history were too general to examine the autoimmune hypothesis for some cases of childhood OCD.
DISCUSSION The prevalence of OCD in a four-site community-based sample of 1,285 children aged 9 through 17 was examined in terms of parent report and child report. Of a total of 35 (2.7%) identified cases, four (0.3%) were identified by the parent and 32 (2.5%) were identified by the child, with only one overlapping case. While rates based on child report are in general agreement with ECA data for adults (age 18⫹) (1.5% for 6-month prevalence across five sites [Karno et al., 1988]), rates based on parent report are especially low. However, caution should be exercised in interpreting the MECA rates in absolute terms because MECA samples reflected their own geographic areas, not the US in general. Regardless, our findings support clinical views that children with OCD often hide their illness and underscore the importance of interviews with the child for diagnosis of OCD. When parents “missed” OCD cases, they were not substituting another disorder. This parallels findings of Weissman et al. (1987) for childhood MDD. More globally, there has been increasing recognition that detection of internalizing (versus externalizing) problems require child report, especially with older children (Rubio-Stipec et al., 1994; Renouf & Kovacs, 1994; Reich & Earls, 1987). A higher degree of comorbidity of OCD with other (especially other anxiety) disorders also was obtained through child report. Thus, it is not being asserted that attempting to keep one’s disorder secret is unique to OCD. However, documentation of the phenomenon for childhood OCD has been lacking. Child report often has been ignored in study designs in the past because of a concern about reliability or validity of the report. However, once the child is 10 or older, child report on the DISC is more like an adult’s (Edelbrock, Costello, Dulcan, Kalas, & Conover, 1985). Of the 31 child-only identified cases in the present study, the youngest were nine-year-olds (n ⫽ 4), and there was one 10-year-old. The rest (84%) were 11–17. Of course, it is still possible that rates based on child report are inflated. Unfortunately, none of the psychometric studies of the DISC 2.3 reported on the reliability or validity for OCD, for either parent or child interviews, because of its low rate. One concern on which we could shed some light involves two open-ended items for “other” obsessions or “other” compulsions (e.g., “Are there any other things I haven’t asked you about that you have to do over and over again or a certain number of times?”). In each case, an example was asked for, and contingent probes followed affirmative responses. However, we considered it possible that the lay interviewer’s evaluation of the example might have contributed to error in the data. To examine the extent to which this
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potential error could have influenced the prevalence rates, we reran the algorithm, omitting these two items. The number of child-identified OCD cases stayed the same (i.e., 32); the number based on parent report dropped from four to three. Additional checks were made on the “caseness” of the child-only identified OCD cases. First, although endorsement of only one diagnosis-specific impairment item (out of six for compulsions and four for obsessions) was necessary to determine a case, the mean and modal number of items actually endorsed was 4.06 and 3, respectively. Only one (3%) of these 31 children endorsed only one item. Moreover, one of the most objective items (asking if the compulsion took an hour or more of the child’s time each day) was answered affirmatively by 20 (65%) of the children. Second, although there are limits to the usefulness of a global impairment measure in indexing impairment due to a specific diagnosis, especially when the child has multiple diagnoses; this approach was used to complement the other information. Based on interviewer ratings reflecting the child’s report and an unpublished revision by Setterberg, Bird, Gould, Shaffer, and Fisher of the Children’s Global Assessment Scale (CGAS; Shaffer et al., 1983), 20 (65%) of the 31 child-only identified cases had scores of 70 or lower, a cutoff sometimes considered useful (Shaffer et al., 1996). A recent epidemiological study of OCD involving adults (Stein, Forde, Anderson, & Walker, 1997) offers caution regarding rates determined by lay interviewers in general, suggesting that clinical reappraisal dramatically lowers the number of cases. We agree with Stein and colleagues that caution should be exerted in interpreting data determined by lay interviewers, and, therefore, the results presented here should not be viewed as conclusive. However, it should be noted that the overall validity of the diagnoses in this report also is supported by the early age of onset for males and the pattern of comorbidity (Swedo et al., 1989; Flament, Rapoport, Berg, Kilts, 1985). Further, the point to be emphasized is that very different prevalence estimates would be obtained from parent reporters alone. Except for the unpublished data graciously supplied by C. Addy upon request, the studies reviewed in Table 1 do not allow for comparison of parent and child reports. However, Addy’s rates provide strong additional support for our finding of parents typically being unaware of their child’s OCD. Only one case of OCD comorbid with tics was identified in this sample. Some studies have found considerable overlap of these disorders (Leonard et al., 1993; Zohar et al., 1992). It does not appear that the low comorbidity was due to ascertainment bias because the prevalence of tics (any tic disorder) in the total MECA sample was 3.04%; the rate was 1.09% when impairment criteria were added. Rates of tics vary considerably across reports, but these are within the range found (Woods, Miltenberger, & Flach, 1996; Tanner & Goldman, 1997). Additionally, it should be recalled that ours is a community
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sample where, in contrast to clinical samples, comorbidity tends to be lower and to reflect cases which are less severe (Anderson, Williams, McGee, & Silva, 1987; Bird, Gould, & Staghezza; 1993; Zoccolillo, 1992). In addition, our proportion of OCD cases who are Black is higher than would be expected based on ECA data (Karno et al., 1988) but is similar to estimates from Valleni-Basile et al. (1994). Considering that the total MECA sample had 15% Blacks and 51% Whites, having the same percentage of Blacks and Whites (31% each) comprise our 35 OCD cases is noteworthy. Our mean age at onset of current symptoms (7.18 for boys and 10.78 for girls) is in line with numerous reports on child, rather than adult, samples. Studies of adults, of course, allow for the possibility of older age at onset and, thereby, a higher mean. In their two-stage epidemiological study of children, Flament et al. (1988) found that onset varied from 7 to 18 years. In Swedo et al.’s (1989) study of the clinical phenomenology of children with OCD, mean age at onset was 10.1 (⫾3.52) years, with seven of the 70 cases being ill before age seven. In a treatment study, Flament et al. (1985) found that some children had shown symptoms as early as age three. Further, it should be noted that the age at onset used in the MECA study is onset of current symptoms. Age at onset of symptoms generally is considerably earlier than age when an OCD diagnosis may be made. The extent of child-reported comorbid mania in our OCD cases appears rather high, and there is considerable debate about the diagnosis of mania in childhood (Carlson, 2000). However, as all but one of these six cases were in the mid- to later-adolescent years, it is possible that these reports are valid. Having OCD is one of several diagnostic criteria for the recently described “pediatric autoimmune neuropsychiatric disorders (OCD and tics) associated with streptococcal infections” (PANDAS; Swedo, 1994). Because the MECA project included interview questions covering medical problems, we had hoped that the medical data on these OCD cases also might be examined in light of the autoimmune hypothesis for at least some cases of childhood OCD (Swedo, 1994). However, the relevant variables were inappropriate for this purpose (e.g., ear infections and tonsilitis were “picked up” only if they necessitated hospitalization). Our having only one OCD case with comorbid tics may indicate a low prevalence of the PANDAS type of disorder. However, because the psychiatric assessment covered only the past six months, there remains the possiblity that these OCD cases had had a tic disorder earlier in their lives. Future studies would benefit by inclusion of information to assess the Jones criteria for the diagnosis of rheumatic fever as well as information for the diagnosis of Sydenham’s chorea (Swedo et al., 1997, 1998). The MECA Program is an epidemiological methodology study performed by four independent research teams in collaboration with staff of the Division of Clinical Research, which was reorganized in 1992 with components now in the Division of Epidemiology and Services Research and the Division of
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Clinical and Treatment Research, of the NIMH, Rockville, MD. The NIMH Principal Collaborators are Darrel A. Regier, M.D., M.P.H., Ben Z. Locke, M.S.P.H., Peter S. Jensen, M.D., William E. Narrow, M.D., M.P.H., Donald S. Rae, M.A., John E. Richters, Ph.D., Karen H. Bourdon, M.A., and Margaret T. Roper, M.S. The NIMH Project Officer was William J. Huber. The Principal Investigators and Coinvestigators from the four sites are as follows: Emory University, Atlanta, U01 MH46725: Mina K. Dulcan, M.D., Benjamin B. Lahey, Ph.D., Donna J. Brogan, Ph.D., Sherryl H. Goodman, Ph.D., and Elaine W. Flagg, Ph.D.; Research Foundation for Mental Hygiene at New York State Psychiatric Institute, New York, U01 MH46718: Hector R. Bird, M.D., David Shaffer, M.D., Myrna Weissman, Ph.D., Patricia Cohen, Ph.D., Denise Kandel, Ph.D., Christina Hoven, Ph.D., Mark Davies, M.P.H., Madelyn S. Gould, Ph.D., and Agnes Whitaker, M.D.; Yale University, New Haven, CT, U01 MH46717: Mary Schwab-Stone, M.D., Philip J. Leaf, Ph.D., Sarah Horwitz, Ph.D., and Judith Lichtman, M.P.H.; University of Puerto Rico, San Juan, U01 MH46732: Glorisa Canino, Ph.D., Maritza Rubio-Stipec, M.A., Milagros Bravo, Ph.D., Margarita Alegria, Ph.D., Julio Ribera, Ph.D., Sara Huertas, M.D., Michel Woodbury, M.D., and Jose Bauermeister, Ph.D.
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