Psychological Adjustment to IDDM: 10-Year Follow ... - Diabetes Care

E p i d e m i o I o g y / H e a 11 h N A L

S e r v i ce s/ P sy c h o soc ia I

R e s e a r c h

A R T I C L E

Psychological Adjustment to IDDM: 10-Year Follow-Up of an Onset Cohort of Child and Adolescent Patients RAMONA DVORAK, MD, MPH LEANNA HERMAN, BA MARY DE GROOT, EDM

ALAN M. JACOBSON, MD STUART T. HAUSER, MD, PHD JOHN B. WILLETT, PHD JOSEPH I. WOLFSDORF, MD, MBBCH

OBJECTIVE — To evaluate the psychological adjustment of young adults with IDDM in comparison with similarly aged individuals without chronic illness. RESEARCH DESIGN A N D METHODS— An onset cohort of young adults (n = 57), ages 19-26 years, who have been followed over a 10-year period since diagnosis, was compared with a similarly aged group of young adults identified at the time of a moderately severe, acute illness (n = 54) and followed over the same 10-year period. The groups were assessed at 10year follow-up in terms of 1) sociodemographic indices (e.g., schooling, employment, delinquent activities, drug use), 2) psychiatric symptoms, and 3) perceived competence. In addition, IDDM patients were examined for longitudinal change in adjustment to diabetes. RESULTS — The groups differed only minimally in terms of sociodemographic indices, with similar rates of high school graduation, post-high school education, employment, and drug use. The IDDM group reported fewer criminal convictions and fewer non-diabetes-related illness episodes than the comparison group. There were no differences in psychiatric symptoms. However, IDDM patients reported lower perceived competence, with specific differences found on the global self-worth, sociability, physical appearance, being an adequate provider, and humor subscales. The IDDM patients reported improving adjustment to their diabetes over the course of the 10-year follow-up. CONCLUSIONS — Overall, the young adults with IDDM appeared to be as psychologically well adjusted as the young adults without a chronic illness. There were, however, indications of lower self-esteem in the IDDM patients that could either portend or predispose them to risk for future depression or other difficulties in adaptation.

T

he recognition that IDDM poses many lifelong challenges and threats has led to a growing body of psychosocial research (1-7). Particular concern has been raised about the effects of IDDM on the psychological adjustment and emotional growth of child and adolescent patients. Early adulthood is the developmental period during which individuals assume a greater degree of independent functioning and take on adult roles; a chronic illness

like IDDM could impede these aspects of life cycle development. Findings from studies of children and adolescents have been inconsistent; some research has suggested that youths with IDDM do not experience lower self-worth (3), more symptomatic distress (1), or alterations in personality (4). However, other findings have suggested that there may be delays in maturation (2) and increased prevalence of eating or other psychiatric

From the Department of Psychiatry (A.M.J., S.T.H., R.D., L.H., M.G.) and the Department of Pediatrics (J.I.W), Joslin Diabetes Center and Harvard Medical School; Judge Baker Children's Center (S.T.H.); and the Graduate School of Education (J-B.W), Harvard University Boston, Massachusetts. Address correspondence and reprint requests to Alan M. Jacobson, MD, Joslin Diabetes Center, One Joslin Place, Boston, MA 02215. E-mail: [email protected]. Received for publication 7 February 1996 and accepted in revised form 2 December 1996. DAS, Diabetes Adjustment Scale; GSI, Global Severity Index; SCL-90R, Symptom Checklist-90 (Revised); SES, socioeconomic status.

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disorders (5,6). Only a few studies have examined the impact of IDDM on patients as they transition into young adulthood. These studies have also presented variable findings regarding key indicators of young adult functioning. For example, Lloyd et al. (7) described IDDM patients ages 16-25 as being more socially isolated than a healthy comparison group. Tebbi et al. (8) found that general well-being was lower in IDDM patients than in age-matched healthy control subjects, but that IDDM young adults adjusted well in terms of employmentrelated issues. Conflicting findings were reported by Robinson and colleagues (9,10) and Lloyd et al. (11) regarding employment-related problems in young adults with IDDM. There has also been evidence for increased rates of depression among adults with IDDM (12), and unexpectedly high rates of suicide among young men with IDDM (13). In the only other longitudinal followup of an onset cohort of child and adolescent patients with IDDM, Kovacs and colleagues (14-16) have focused on longterm psychiatric and medical sequelae. They have suggested that the onset of IDDM is associated with adjustment reactions that, although mild and transient, seem to indicate increased risk for later psychiatric problems (14,15). This rinding is consistent with our initial reports regarding the impact of IDDM onset on child and adolescent patients (1), and the effect of early adjustment problems on subsequent adherence difficulties (17,18). Other findings from this study (19) also suggested that youths with diabetes may have an increased risk for psychiatric disorders (16) or suicidal ideation when followed through late adolescence. These results were consistent with those of cross-sectional studies (12,13) documenting high rates of affective disorder in adults with IDDM. One methodological problem affecting the interpretation offindingsfrom the studies by Kovacs and colleagues (14-16) was that a control group was not included. Our study does include an age-matched comparison sample followed over the same period of time using the same measures of 811

Psychological adjustment to IDDM

Table 1—Sododemographic features of the sample populations at study onset IDDM group

Comparison group

n Sex

57

54

Male Female Average age (years) Social class (%)T

29 28

36 18

12.8 ±2.0

12.7 ±1.9

10.5 31.6 31.6 24.6

31.5 50.0 16.7

1 2 3 4 5 Months since diagnosis Family situation (%) Lives with biological mother and father Lives with mother Lives with mother and stepfather Lives with father and stepmother Lives with two adoptive parents Other

1.8

1.9 0

5.1 ±3.8

4.6 ±4.1

73.7 21.0

77.8 11.1

3.5 0 0 1.7

1.9 1.9 1.9 5.6

Data are means ± SD, n, or %. tResults from HoUingshead Two-Factor Index of Social Position, x2 = 22, P < 0.001 (tested with categories 4 and 5 merged to account for small cell frequencies). Percentages do not add to 100% because of rounding.

studied. The diagnostic breakdown of the sample was as follows: fractures (48%), infection (15%), appendicitis (13%), and lacerations and other injuries (24%). The study did not require a specific pattern of medical follow-up for the acute illness group (1). The sociodemographic characteristics of the subjects entered into the longitudinal study are presented in Table 1. As reported earlier (1), there were no significant differences between the two samples with respect to age, sex, and family situation. The diabetic sample had fewer families from the highest and more from the lower social classes. All subjects in the diabetic and all but one (an African-American boy) in the comparison group were Caucasian. There was no difference in time from diagnosis between the groups. Procedures Ten years after their initial evaluation, patients were evaluated in terms of 1) sociodemographic dimensions, 2) psychological adjustment, 3) social relationships, 4) attachment representations, and, 5) diabetesspecific medical and psychological status. The present study investigated sociodemographic and psychological adjustment outcomes. Subsequent studies will examine other measurements made at the 10-year assessment.

adjustment as for the IDDM group. This RESEARCH DESIGN AND comparison group was identified at the time METHODS of an acute illness or injury that required treatment and so brought them to the atten- Samples tion of a physician. Following resolution of The IDDM patients (ages 9-16) were the acute condition, the comparison group recruited within 1 year of diagnosis after remained essentially medically healthy, and they presented to the Joslin Clinic Pediatric therefore served as a control group for ini- Service in the period 1982-1984; 76% of tial medical care without chronicity. those recruited entered the study. Each Previously we reported that there were IDDM patient was initially managed by a no differences in the psychological adjust- health care team that included a pediatric ment of these patient groups, shortly after diabetologist and a diabetes nurse educator. diagnosis, at ages 9-16 years (1). Here we The frequency of medical visits matched extend our observations about patient the usual practice of the pediatric service. adjustment by studying these same patients At the end of the 10-year follow-up period, 10 years later. We address four research 67% of the IDDM sample were continuing questions: 1) At 10-year follow-up, are there to receive their follow-up diabetes care at differences in sociodemographic and the Joslin Clinic by pediatric or adult diadeviance indices reflecting aspects of adap- betologists. The remainder of patients were tation (e.g., years of schooling, delinquent being seen elsewhere. activities, drug use patterns) between the The acute illness group consisted of diabetic and acute illness samples? 2) At 10- children (ages 9-16) who, in 1982-1984, year follow-up, does the psychological had had an acute medical problem within adjustment of the two samples differ in the previous year that required a specific terms of perceived competence and psychi- change in their daily activities (denned as atric symptoms? 3) Using psychological two or more visits to a physician or hospiadjustment data (on self-esteem and symp- talization, and loss of at least one day of toms) gathered in years 2,3,4, and 7, were school or, during vacation periods, one there group differences at interim points in missed day of extracurricular activities). time between diagnosis and the 10-year fol- This group was recruited from a local low-up? 4) Within the diabetic sample, was health maintenance organization; 56% of there deterioration in diabetes-related the children recruited entered the study. adjustment over the 10 years of follow-up? These subjects were no longer ill when

Sociodemographic measures Family socioeconomic status (SES) was measured at study onset using the HoUingshead Two-Factor Index of Social Position (20). This information was supplemented in year 10 with self-report data about marital status, living situation, schooling, employment, sources of financial support, and other important life events over the previous 3 years (e.g., hospitalization, imprisonment, medical illness, treatment for drug or alcohol abuse). Drug use and delinquent/criminal behaviors were assessed using self-report questionnaires derived from national surveys of adolescents and young adults (21,22). The drug use questionnaire evaluated whether or not a person had used a given drug (i.e., cigarettes, alcohol, marijuana, or cocaine) in the previous year and, if so, how often. The delinquent/criminal behaviors questionnaire gathered information on minor to more serious infractions, ranging from public drunkenness and petty theft to selling drugs, assault and battery, arson, armed robbery, and rape.

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The self-report method for collecting drug use and delinquent behaviors data has been found to be highly reliable and valid, particularly when compared with the use of official and other-based reports of such activity in this age group (21,22). Studies of self-report methods suggest that deliberate falsification is rare. In research on self-reported delinquency, it appears that some subjects report relatively trivial events that would not be considered delinquent or criminal by law enforcement agencies (22). Therefore, we separately compared the groups reporting moderately severe to severe infractions (buying or selling stolen goods, carrying a concealed weapon, breaking into a building or car, selling drugs, rape, or armed robbery). Generic psychological measures: years 1-4 Self-esteem. The Coopersmith Self-Esteem Inventory (23) is a widely used questionnaire containing 58 items that embody four theoretical subscales of self-esteem (general, school, social, and home) and an eightitem lie scale. Previous studies (24,25) have shown that the measure is most useful in providing a global evaluation of self-esteem. For this reason, only the total scale results are reported. Behavioral symptoms and social functioning. Achenbach and Edelbrock's Youth Self Report (26) assesses behavior problems or symptoms as reported by the child. In addition to symptoms, this instrument indexes a wide range of school, peerrelated, and social competencies. Evidence of favorable reliability and validity of the measure has been widely reported (26). Generic psychological measures: year 7 Self-esteem. The Rosenberg Self-Esteem Scale (27) is a 10-item Guttman scale designed to provide a global measure of adolescent and adult self-esteem. Reproducibility and scalability coefficients suggest that the items have satisfactory internal reliability. Strong test-retest reliability has also been demonstrated (27). Psychiatric symptoms. Symptoms were assessed using the SCL-90R (Symptom Checklist-90 [Revised]) (28). Each of the 90 items is rated on a five-point scale of distress, ranging from not-at-all (0) to extremely (4). The instrument contains nine primary symptom dimensions (somatization, obsessive-compulsive, interpersonal sensitivity, depression, anxiety,


1997

hostility, phobic anxiety, paranoid ideation, and psychoticism) and a global index of distress (Global Severity Index [GSI]). This self-report symptom inventory has shown acceptable reliability and validity (28). In addition to being used to derive continuous scores of symptomatic distress, the SCL90R can be used to screen populations for possible cases of psychiatric illness by using a cutoff score of 63 or greater on the GSI or any two primary scales (28). Generic psychological measures: year 10 The SCL-90R was repeated in year 10. In addition, perceived competence was evaluated using the 50-item Harter Perceived Competence Scale, originally developed and used with children and adapted for adolescents and adults (29,30). The scale assesses young adult self-perception of competence in general and in 11 specific domains, including physical appearance, job, and social ability. The measure has shown satisfactory reliability and validity (29,30). This scale was introduced because it provided assessment of multiple different aspects of perceived competence. Diabetes-related adjustment The Diabetes Adjustment Scale (DAS) (31,32) was used to assess attitudes and feelings about diabetes. In addition to an overall score, four subscales measure attitudes toward diabetes and the body, independence, peer relationships, and family relationships. The measure was administered at yearly intervals in years 1-4, and again in years 7 and 10. Reliability of the measures Because our study incorporated measures previously developed in the context of research on other populations, we examined the internal consistencies of the scale scores, using Chronbachs alpha. In brief, we found no differences between the subject groups with regard to the internal consistency of scales. For example, in year 1, the alpha coefficients for the Coopersmith Self-Esteem total scores were 0.53 (IDDM group) and 0.52 (comparison group). In year 10, the coefficients for the SCL-90R scales for the IDDM group were 0.50-0.92 and for the comparison group were 0.64-0.84. In year 10, the coefficients for the Perceived Competence Scale for the IDDM group were 0.69-0.90 and for the comparison group, 0.52-0.91. Alpha coefficients for the DAS subscales and total

scores were 0.59-0.89 in year 1 and 0.56-0.87 in year 10. Data analyses To answer our research questions and to accommodate the longitudinal nature of the data, several statistical methods were used, reflecting the various ways in which information regarding different constructs was gathered. Because effects were found for sex and SES in some analyses, we present findings for analyses performed with and without adjustments for these characteristics. The first two research questions addressed differences in functioning between the IDDM and comparison groups as assessed at the 10-year follow-up. Because these comparisons used data collected at only one time point, betweengroup differences were evaluated using contingency table analysis for categorical outcomes and t testing for continuous outcomes. In RESULTS, we also present an evaluation of the same between-group differences adjusted for SES and sex. These adjusted analyses used logistic regression analysis for categorical outcomes and multiple regression analysis for continuous outcomes. In each case, to evaluate the impact of group adjusting for SES and sex, we compared a pair of nested models, with one containing only the SES and sex predictors, and the other containing these predictors plus a dichotomous predictor representing group. These model comparisons provided statistics for testing the null hypothesis of no group differences: a x2 statistic for categorical outcomes and an F statistic for continuous outcomes. Because psychological adjustment data (symptoms, self-esteem, and perceived competence) were also available from interim data collected in years 2-4 and 7, we made additional comparisons of patients on measures collected at these time points and in year 10. Our research question involved examining whether group effects were found over the entire period of follow-up, and whether the size of these possible effects varied systematically over time. Thus the effect size of each betweengroup comparison was estimated at years 2, 3, 4, 7, and 10, and the sequence of values inspected for trends. Diabetes adjustment was measured repeatedly across the 10 years of the study. To answer questions concerning this construct, we used individual growth modeling (33). This method is an accepted and pow813


RESULTS

Table 2—Sociodemographic characteristics hy sample group in year 10

Sociodemographic and deviance dimensions n 57 Table 2 summarizes the features of the two 54 Age 22.9 ±2.1 (18.9-27.3) 22.9 ± 2.0 (19.4-26.8) groups at year 10 of the study. Of the original 61 patients with IDDM, 2 had died by Schooling year 10, reducing the available sample for Attending high school 2 0 study to 59. Of these, 2 subjects refused to 2 Never completed high school 0 participate in any medical or psychosocial High school or general equivalency 21 4 evaluations. Of the original 62 acute illness diploma only patients, 2 could not be found and 6 others Attending trade school 7 4 refused to participate in a formal evaluaAttending college, no degree 40 50 tion. Thus, data were obtained from 57 7 5 Associates degree diabetic and 54 acute illness subjects. 21 Bachelors degree 33 Masters degree 2 2 Two deaths in the diabetic sample Currently attending school 40 44 occurred over the 10 years of follow-up. Employment status One death occurred as the result of a dri44 50 Employed only ving accident. The other occurred as the 7 In school, not employed 9 result of a possible suicide. In school, employed 35 33 There were minimal differences Neither in school nor employed 16 6 between the groups in achieving important Marital status educational milestones. For example, they Single 88 87 had made similar progress through school, Married or living together 29 23 with identical high school graduation rates Separated or divorced 2 0 (98% for both groups); 77% of the diabetes and 94% of the acute illness group Parenting status 12 had received some form of post-high Child birth or adoption 6 school education (x2 = 6.7, df = 1, P = Women only 0.01; after controlling for sex and SES, x2 4 6 Spontaneous abortion = 0.41, df = 1, P > 0.1). (The first of these Medical abortion 7 X2 statistics was obtained from a continLiving arrangements gency table analysis, the second from a With parent 58 46 comparison of nested logistic regression Legal issues models; see METHODS.) 9* 24* Guilty of misdemeanor or felony 2 2 Imprisoned > 1 month The two groups had similar employMental health treatment ment patterns. As shown in Table 2, the 12 24 Outpatient rates of current employment did not differ. 7 4 Residential In addition, the groups did not differ in the percentage of individuals holding a second Data are means ± SD (range) or %. *x2 = 8.4, df = 1, P < 0.01 (controlling for sex and socioeconomic status). job, hours worked per week, length of employment, or hourly pay. Subjects answered these questions with regard to erful way of analyzing multiwave data to among groups of individuals are explored. both their current job and their best job. answer questions about individual change The use of growth modeling involves the No between-group differences were found over time (33). In contrast to traditional adoption of a suitable mathematical model to for either set of inquiries. Twelve percent (n = 7) of the diabetes repeated-measure analysis of variance, a characterize the within-individual growth. technique that tests differences in between- If a linear model is adopted, the technique and twenty-four percent (n = 13) of the group means over time, growth modeling allows investigation of questions about comparison group reported receiving permits the study of within-individual as interindividual differences in change over counseling or therapy for mental health well as between-individual patterns of time (the slope of the growth model) and problems in the previous 3 years (x2 = 2.6, change over time. Growth modeling con- interindividual differences at a given point in df = 1, P > 0.1; after controlling for sex and sists of two analytic stages: At the within- time (the intercept). Inspection of within- SES,x 2 =1.7,df=l,P>0.1). individual stage (level 1), change over time individual growth trajectories suggested that Twenty-three percent (n = 13) of the in the measure of interest is separately sum- diabetes adjustment was a linear function of IDDM group and forty-six percent (n = 25) marized for each person in the sample by time; therefore, a straight-line individual of the comparison group reported a history fitting an individual growth model to that growth model was adopted. Because we of personal illness or injury (excluding diapersons data by regression analysis. At the were interested in change over time, we betic complications such as ketoacidosis, between-individual stage (level 2), differ- examined the slope of diabetes adjustment severe hypoglycemia, or retinopathy) in ences in the level 1 growth parameters scale scores over the 10-year follow-up. the 3 years prior to the year 10 assessment IDDM group

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(X2 = 6.9, df = 1, P < 0.01; after controlling for sex and SES, x2 = 10.9, df = 1, P < 0.01). When diabetic complications were included, 5 additional IDDM patients reported at least one medical problem (x2 = 2.5,df=l,P>0.1; after controlling for sex and SES, x2 = 6.6, d f = l , P = 0.01). Nine percent (n = 5) of the IDDM and twenty-four percent (n = 13) of the acute illness group reported a history of conviction or pleading guilty to a crime in the previous three years (x2 = 4.80, df = 1, P < 0.05; after controlling for sex and SES, x2 = 8.4, df = 1, P < 0.01). To examine delinquent and criminal activity in more detail, a self-report questionnaire was used. We found that 12% (n = 7) of the IDDM and 19% (n = 10) (NS) of the acute illness group reported participation in moderately serious criminal activities (buying or selling stolen goods, carrying a concealed weapon, breaking into a building or car, or selling drugs). None acknowledged serious crimes (e.g., armed robbery, rape). Regarding drug use (see Table 3), more acute illness than diabetic patients reported having used marijuana and alcohol in the previous year, but the effect was not significant after controlling for sex and SES. The percentage of subjects who smoked daily was significantly lower in the IDDM group after controlling for sex and SES (x2 = 4.6, df = 1, P < 0.05). There were no differences between the two groups with regard to frequency of use for subjects who reported some use of marijuana and alcohol. Comparison with available population-based data (21) did not demonstrate that the study subjects used cigarettes, alcohol, marijuana, or cocaine at unusually high or low rates (see Table 3). Psychological adjustment Comparison of the groups at year 10 showed no differences in level of psychiatric symptoms (see Table 4). Using cutoff scores suggested by Derogatis (23), 11% of the diabetes and 10% of the acute-illness group had symptom levels that suggested the presence of a current psychiatric illness. There were no SES effects on psychiatric symptoms, but we found sex effects such that across the two groups, males were found to be more symptomatic overall (SCL-90R GSI subscale, P < 0.02) and on some subscales, including obsessive-compulsive (P < 0.003), interpersonal sensitivity (P < 0.04), depression (P < 0.04), paranoid ideation (P < 0.0001), and psychoticism (P < 0.02). No sex differences DIABETES CARE, VOLUME 20, NUMBER 5, MAY

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Table 3—Drug use in the last year: comparison of IDDM and acute illness groups with college students and young adults ages 19-32 years (15) IDDM group Cigarettes Daily >Weekly Monthly Ever Alcohol Daily >Weekly Monthly Ever Marijuana Daily >Weekly Monthly Ever Cocaine Daily >Weekly Monthly Ever

Acute illness group College students

21* 9 7 37

27* 10 12 48

2 46 23 70

2 65 22 89

2 4 18 23

8 4 33 44

0 0 2 2

0 0 6 6

Young adults

14

21

37

38

4

5

87

86

2

2

28

25

0

0

3

6

Data are n. *Comparison of IDDM and acute illness groups, controlling for SES and sex: x2 = 4.6, df = 1, /' < 0.05. Daily, every day in past year; >weekly, once or twice/week in past year; monthly, any use below once/week in past year; ever, any use in past year.

were found on the somatization, anxiety, hostility, or phobic anxiety subscales. We did find evidence of diminished perceived competence, with IDDM patients having lower scores on the global self-worth, sociability, physical appearance, being an adequate provider, and humor subscales. No SES effects were found on the perceived competence scales. However, across the groups, female subjects had higher perceived competence in terms of nurturance (P < 0.0001), morality (P < 0.008), household management (P < 0.003), and being an adequate provider (P < 0.02), and lower perceived competence in terms of athletic ability (P < 0.0001). No sex differences in perceived competence were found for intimate relationships, social functioning, intelligence, humor, and global self-worth. To evaluate the study samples for interim differences that might have occurred earlier, we estimated the betweengroups effect size for symptoms (Youth Self Report [26]; SCL-90R [28]) and self-esteem (Coopersmith Self-Esteem Inventory [23], Rosenberg Self-Esteem Scale [27], and Perceived Competence Scale [29]) in each year of follow-up (years 2, 3, 4, 7, and 10). No between-group differences were found, except as noted above for the perceived

competence scales at year 10. Furthermore, there was no systematic change in the size of effects over time for either self-esteem or symptom severity. Adjustment to diabetes Using our repeated measurements of diabetes adjustment (where lower score means better adjustment), we assessed the adaptation of this group with regard to illness-specific concerns. The rate of change in the DAS total score (mean -2.0, SD 3.6, t = - 4 . 3 , P < 0.0001) differed significantly from zero, suggesting that adjustment improved over time. Furthermore, similar trends observed in average adjustment were observed on most of the DAS scales between years 1 and 10 (dependence: t = -7.7, P < 0.0001; family: t = - 3 . 3 , P < 0.01; peers: t = -2.4, P < 0.05; school: t = -4.9, P < 0.0001). There was an effect of SES on diabetes adjustment, such that patients from the highest social classes reported higher total DAS scores by year 10 (P < 0.01). There were no effects of SES on DAS subscale scores. There were no effects of sex on diabetes adjustment over time. For example, male and female subjects did not differ on the DAS total and subscale scores in both the year 1 and year 10 assessments. 815


tions; 35). Further follow-up will be needed to detect such effects in terms of psychiatric symptoms or disorders. Measure From a developmental and relational Subscale IDDM group Acute illness group perspective, we did identify an effect of IDDM on our young adult patients—lower SCL-90R* perceived competence. Differences emerged Global Severity Index 48.0 ±9.4 48.6 ±7.8 on several perceived competence subscales, Anxiety 48.7 ±9.5 49.1 ±8.5 including those reflecting social relationDepression 51.1 ±8.0 50.9 ±10.0 ships, physical appearance, humor, sense of 47.7 ±8.6 47.1 ±7.1 Hostility being an adequate provider, and general 47.6 ±10.0 Interpersonal sensitivity 47.6 ±8.3 self-worth. These differences could repre48.2 ±9.7 51.3 ±8.3 Obsessive-compulsive sent early signs of what may become more Paranoid ideation 46.9 ±9.6 48.2 ±9.8 clear-cut presentations of self-esteem probPhobic anxiety 46.5 ±7.6 46.8 ±7.7 lems, as well as depressive symptoms and Psychoticism 45.6 ±9.3 45.1 ±8.3 illnesses, later in adulthood (JA. Samson, Somatization 49.8 ± 8.6 51.2 ±9.7 A.M.J., M.G., unpublished observations; Perceived competence 6,12,35). Thefindingsare partly consistent Global self-worth 3.3 ±0.6 2.9 ± 0.6 t with findingsfrom Kovacs et al. (16), in that Sociability 3.3 ±0.5 2.9 ± 0.6 t we found subtle indications of self-esteem 3.2 ±0.6 3.2 ±0.6 Job competence problems. On the other hand, Kovacs et al. 3.3 ±0.6 Nurturance 3.2 ±0.5 suggested that the effects of IDDM on the 2.8 ±0.7 2.5 ±0.9 Athletic competence development of psychopathology are more 3.0 ±0.7 Physical appearance 2.6 ±0.61 pronounced by late adolescence (16). DifAdequate provider 2.8 ±0.71 3.1 ±0.5 ferences between these two longitudinal 3.3 ±0.7 3.1 ±0.7 Morality studies could reflect different measurement 2.8 ±0.7 Household management 2.9 ±0.7 strategies, reflecting the different foci of the 2.9±0.7§ 3.1 ±0.7 Intimate relations two studies: psychopathology versus fami3.3 ±0.6 3.0±0.6§ Intelligence lies and developmental issues. Moreover, 3.2 ±0.6* 3.5 ±0.5 Humor the use of a comparison sample followed in Data are means ± SD. All comparisons were made controlling for socioeconomic status and sex. *Data prethe same manner may affect conclusions sented as t scores, tp < 0.006; fP < 0.03; §P = 0.06. about the prevalence of psychopathology The indication in our study of lower CONCLUSIONS— The findings from effects were uncovered. At the 10-year eval- perceived competence in social relationthis 10-year follow-up study indicated that uation, about 10% of subjects in both ships in young adulthood is of particular patients with IDDM, as a group, did not groups reported symptom levels consistent interest given our more extensive evaluation exhibit clear detrimental psychosocial with the presence of a psychiatric disorder. of close peer and romantic relationships in effects from having this chronic illness This study was not designed to specifically these young adults (36). These new findings through the developmentally demanding examine psychopathology The SCL-90R is parallel findings from other social relationperiod of adolescence. For example, they not sufficiently sensitive or specific to detect ships analyses (36) that also indicated that did not report more criminal activity, drug all cases of past or even current disorders young adults with IDDM experience less use, psychiatric treatment or hospitaliza- (28). Because standardized psychiatric inter- comfort with close relationships. This pertion, school performance failures, or unem- views were not performed, meaningful dif- ceived competencyfindingis also consistent ployment. This onset cohort ranged in age ferences between the groups might not have with that of Lloyd et al. (7), who reported from 9 to 16 years at the beginning of the been detected. It is also possible that the rate IDDM patients were more socially isolated, study, and at 10-year follow-up, from ages of psychiatric disorder may increase over and Tebbi et al. (8), who reported IDDM 19 to 26 and entering adulthood. They time, and differences become fully apparent patients experienced lower overall wellwere carrying out the developmentally later in adulthood (J.A. Samson, A.M.J., being (8). However, in light of the multiple appropriate tasks involved in the transition M.G., unpublished observations). For comparisons we performed, the most conto adulthood. Their self-reported diabetes example, the primary age of risk for major servative interpretation of these findings is adjustment appeared to have improved depression is age 25-40 years. If IDDM that IDDM was not found to have had a over the 10-year follow-up period. places patients at risk for depressive disor- clear negative impact on the adjustment of The level of reported psychiatric symp- der, this effect may not become apparent for young adults with IDDM. Indeed, the results of our longitudinal toms in the IDDM group also did not differ several years. Evidence from other cross-secfrom those of the comparison group. These tional studies of adults with IDDM has diabetes adjustment reports suggested that symptom findings obtained for both male shown that IDDM in adults is associated patients became more comfortable with havand female subjects and across SES levels. with an increased prevalence of common ing IDDM over the 10-year period. Because Although male subjects reported more psychiatric conditions, such as major we could not ask the comparison sample symptoms, this pattern was found across depression and anxiety disorders Q.A. Sam- about adaptation to diabetes, it is possible groups. No sex or SES by group interaction son, A.M.J., M.G., unpublished observa- that improved adjustment could reflect the Table 4—Psychiatric symptoms and perceived competence by group

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effects of repeated questioning. It is also possible that the IDDM patients experienced themselves as adapting better to IDDM over time, even though they had begun to experience subtle self-esteem problems. There were also suggestions of protective effects of IDDM on health-related behaviors—specifically, trends towards less frequent cigarette, marijuana, and alcohol use. It is important to note that comparisons with national probability samples did not show a pattern of diabetic patients using drugs or alcohol at unusually low rates (21). Conclusions drawn from comparisons with national data must be tempered by recognition of likely differences in sample characteristics and study procedures. For example, our study population was largely urban and suburban, drawn from Boston and southern New England, and included few rural youth. Furthermore, our sample was Caucasian and had a higher level of educational achievement than would be found in samples drawn for national surveys. This study, because of its sample and design, had certain limitations that could influence the interpretation of the results. The sample populations were relatively homogeneous, Caucasian, reasonably well educated, and underrepresented in terms of the lowest socioeconomic strata. It is possible that IDDM causes more serious psychosocial problems in patients from minority populations or patients who are poor or less educated. It is also possible that the rigors of a longitudinal study led to fewer psychologically impaired patients and families agreeing to participate in the studies. The change in the measurement of psychological symptoms and self-esteem makes longitudinal comparisons more difficult. For example, our data suggested that self-esteem problems were beginning to show up in the year 10 assessments, where they had not been noted previously when this construct was assessed in years 1-4, or 7. This finding may be a sign of developing problems, and is consistent with other research indicating that depressive disorders are found at high rates in late adolescence and early adulthood among IDDM patients (6,12,19,35). However, we also used a different measure of self-esteem issues in year 10. The emergence of these differences may have reflected that change in the measure used. Although the self-report methods for gathering drug use and delinquent/criminal behaviors have been widely used in large DIABETES CARE, VOLUME 20, NUMBER 5, MAY

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surveys and have been found to be reliable and valid (21,22), differences between our samples with regard to their exposure to medical care could have led to biased reporting. Typically, IDDM patients had been followed medically at our center and could have been relatively uncomfortable in reporting less desirable information, even though the confidentiality of data collected was emphasized, and the research assistants performing the collections were not part of the health care team. By year 10 of follow-up, two subjects with IDDM had died in accidental or suicide-related deaths. Expressed as deaths per 1,000 patient years of follow-up (3.3 per 1000 years), this death rate is higher than expected from national statistics for similar-age individuals (38). This finding is consistent with epidemiological studies of diabetic patients that have also suggested that rates of death for adolescents with IDDM are higher than expected when compared with normative samples (37,38). Although derived from a small sample, our results underline the hazards of IDDM during adolescence. Taken together with previously reported results of our longitudinal study (18) showing that 28% of adolescent IDDM patients experienced at least one episode of serious hypoglycemia or ketoacidosis over the first several years of followup, thesefindingsremind us of the physical dangers of IDDM in adolescence. Acknowledgments— This study was supported by National Institutes of Health Grant DK-27845.

References

6.

7.

8.

9. 10.

11.

12.

13. 14.

15.

16. 1. Jacobson AM, Hauser ST, Wertlieb D, Wolfsdorf JI, Orleans J, Vieyra M: Psychological adjustment of children with recently diagnosed diabetes mellitus. Diabetes Care 17. 9:323-329, 1986 2. Hauser ST, Jacobson AM, Noam G, Powers S: Ego development and self-image complexity in early adolescence: longitudinal studies of psychiatric and diabetic patients Arch Gen Psychiatry 40:325-332, 1983 3. Jacobson AM, Hauser ST, Noam G, Powers 18. S: The influences of chronic illness and ego development on self-esteem among adolescent diabetic and psychiatric patients. Journal oj Youth and Adolescence 13:489-507, 1984 19. 4. Dunn SM, Turtle JR: The myth of the diabetic personality. Diabetes Care 4:640-646, 1981 5. Rodin GM, Daneman D: Eating disorders

and IDDM: a problematic association. Diabetes Care 15:1402-1411, 1992 Blanz B, Rensch-Riemann B, Fritz-Sigmund D, Schmidt M: IDDM is a risk factor of adolescent psychiatric disorders. Diabetes Care 16:12, 1993 Lloyd CE, Robinson N, Andrews B, Elston MA, Fuller JH: Are the social relationships of young insulin-dependent diabetic patients affected by their condition? Diabct Med 10:481-485, 1993 Tebbi C, Bromberg C, Sills 1, Cukierman J, Piedmonte M: Vocational adjustment and general well-being of young adults with IDDM. Diabetes Care 13:98-103, 1990 Robinson N, Yateman NA, Protopapa LE, Bush L: Unemployment and diabetes. Diabet Med 6:797-803, 1989 Robinson N, Stevens LK, Protopapa LE: Education and employment for young people with diabetes. Diabet Med 10:983-989, 1993 Lloyd C, Robinson N, Fuller J: Education and employment experiences in young adults with type I diabetes mellitus. Diabet Med 9:661-666, 1992 Mayou R, Peveler R, Davies B, Mann J, Fairburn C: Psychiatric morbidity in young adults with insulin dependent diabetes mellitus. Psychol Med 21:639-645, 1991 Kyvik K, Stenager E, Green A, Svendsen A: Suicides in men with IDDM. Diabetes Care 17:210-213, 1994 Kovacs M, Feinberg TL, Paulauskas S, Finkelstein R, Pollock M, Crouse-Novak M: Initial coping responses and psychosocial characteristics of children with insulindependent diabetes mellitus. J Pediatr 106:827-834,1985 Kovacs M, Ho V, Pollock MH: Criterion and predictive validity of the diagnosis of adjustment disorder: a prospective study of youths with new-onset insulin-dependent diabetes mellitus. Am]Psychiatry 152:523528,1995 Kovacs M, Mukerji P, Drash A, Iyengar S: Biomedical and psychiatric risk factors for retinopathy among children with IDDM. Diabetes Care 18:1592-1599, 1995 Jacobson AM, Hauser S, Lavori L, Wolfsdorf J, Herskowitz R, Milley J, Bliss R, Gelfand E, Wertlieb D: Adherence among children and adolescents with IDDM over a four-year longitudinal follow-up: the influence of patient coping and adjustment. J Pediatr Psychol 15:511-526, 1990 Dumont R, Jacobson AM, Cole C, Hauser ST, Wolfsdorf JI, Willett JB, Milley JE, Wertlieb D: Psychosocial predictors of acute complications of diabetes in youth. Diabet Med 12:612-618, 1995 Goldstone DB, Kovacs M, Ho VY, Parrone PL, Stiffler L: Suicidal ideation and suicidal attempts among youth with insulin-dependent diabetes mellitus. J Am Acad Child Adolesc Psychiatry 33:240-246, 1994

817


20. Hollingshead AB, Redlich SC: The Two-Factor Index of Social Position. New Haven, CT, 1957 2 7. 21. Johnston L, O'Malley P, Bachman J: National Survey Results on Drug Use from The Monitoring the Future Study 1975-1992. Vol. 2: College and Young Adults. Washington,

DC, U.S. Govt. Printing Office, 1993 (Publ. HE20.8202:D84) 22. Elliot DS, Agaton SS, Huizinga D, Knowles

23. 24.

25. 26.

818

Child Behavior Checklist. Burlington, VT, 33. Willett JB, Ayoub CC: Using growth modDept. of Psychiatry, Univ. of Vermont, 1983 eling to investigate systematic differences in Rosenberg M: Society and the Adolescent Selfgrowth: an example of changes in the funcimage. Princeton, NJ, Princeton Univ. Press, tioning of families at risk of maladapative 1965 parenting, child abuse, or neglect. J Consult 28. Derogatis LR: SCL-90 Administration, ScorClin Psychol 59:38-47, 1991 ing and Procedures Manual-I. Baltimore, MD, 35. Lustman P, Griffith LS, Gavard JA, Clouse

Johns Hopkins Univ. Press, 1983 29. Harter S: Perceived competence. Child Dev 53:87-97, 1982

RE: Depression in adults with diabetes. Diabetes Care 12:1631-1639, 1992 36. Jacobson AM, Hauser ST, Willett JB, Dvorak R, Wolpert H, Herman L, de Groot M: Social BA, Canter RJ: The Prevalence and Incidence 30. Messer C, Harter S: Perceived Competence relationships among young adults with of Delinquent Behavior: 1976-1980. Boulder, Scale for Adults. Unpublished manual. Deninsulin-dependent diabetes mellitus: Ten year CO, Behavioral Research Institute, 1983 ver, CO, Univ. of Denver, 1987 follow-up of an onset cohort. Diabet Med Coopersmith S: The Antecedents of Self- 31. Sullivan B: Adjustment in diabetic adoles14:73-79,1997 Estecm. San Francisco, CA, Freeman, 1967 cent girls. I. Development of the diabetic adjustment scale. Psychosom Med 41:119- 37. Brackenridge R: Medical Selections of Life Kokenes B: A factor analytic study of the Risks. 2nd ed. New York, The National 126,1979 Coopersmith self-esteem inventory. AdolesPress, 1985 32. Sullivan B: Adjustment in diabetic adolescence 13:149-155,1978 cent girls. II. Adjustment, self-esteem, and 38. Tunbridge WMG: Factors contributing to Wylie R: The Self-Concept. Vol. 1. Lincoln, deaths of diabetics under fifty years of age. depression. Psychosom Med 41:127-138, NE, University of Nebraska Press, 1976 Lancet 2:569-572, 1981 1989 Achenbach T, Edelbrock C: Manual for


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