Impact of Illness on Development and Psychosocial Functioning

A review of studies on the psychosocial impact of rheumatic disease suggests that the outlook appears to be less grim than early studies suggested (21). However, there certainly remains a vulnerability towards internalizing symptoms (anxiety, depression, adjustment disorder) during adolescence in the context of chronic rheumatic disease and considerable restrictions in the social domain. Similarly, a meta-analysis (47) showed a low to moderate effect (0.30) of the disease on rate of psychological disturbance. This was more pronounced for internalizing symptoms (0.47) and negligible with respect to externalizing behavior and self-concept (<0.15, respectively). However, since most of the studies solely relied on parental accounts "it is unclear to what extent inclusion of child report of adjustment problems would change the nature of the results of the meta-analysis" (47).

If child reports of adjustment problems are included, results appear to be even more favorable: compared to schoolmates, young people with JIA (23 children and 24 adolescents from the Netherlands) did not display more psychopathology nor differ with respect to internalizing symptoms (48). The only difference of adolescents was in the social competence domain but was at least partly related to the disease itself (participation in sports, number of subjects at school). However, playing with or seeing friends was similar. This fits to the overall result of a recent American study which used a longitudinal, case-controlled study design to assess the social functioning of young people with JIA (49). As in the first part of the longitudinal study (50), although 74 young people with JIA were found to be similar to their case-control classmates on all measures of social functioning and behavior, the follow-up study on 57 adolescents (mean age 13 years) did not show differences on any of the measures of social reputation or social acceptance. In addition, children with JIA were not different from controls with respect to non-social attributes, "suggesting that peers did not perceive these children as chronically ill" (49) With respect to the obvious psychological hardiness of these young people, the authors conclude " that the social development of children is highly protected, with maladjustment occurring only with exposure to severe adversity" (49). Since patients with more severe or active disease showed subtle decrements over time, these results would best fit a dose response model of disease effects.

Finally, results of studies on young adults with JIA may also contribute important details to our understanding of the disease impact during the transition from childhood to adulthood. A British study assessed 246 adults (mean age 28 years) individually by interview, various questionnaires, and physical examination. The physical outcome showed a remarkably high percentage of patients with clinically active arthritis (43%) and severe functional limitations (37-43%). However, the sample was biased towards patients with the worst long-term prognosis [i.e. systemic and rheumatoid factor positive polyarthritis constitute 14% of common pediatric rheumatology populations but constituted 36% of the study group (51)]. The educational level of the study group was higher than national average, as well as compared to patients' siblings (52). However, unemployment was higher than in the national population (137%). With respect to social maturation the study group revealed a moderate delay: age of onset of sexual activity was higher than in the general population, the percentage of single patients was 12% higher than for their siblings and the percentage of married or cohabitating persons 11% lower than that for their siblings (53). Of 83% sexually active adults, 58% experienced difficulties related to their disease which is in agreement with Siegel and Baum (27) who stressed the importance of the disease impact in this respect. Even more disturbing was that 30% of those who were not sexually active felt that this was due to their illness. Most of these (n = 10) individuals "felt they were not perceived as sexual beings" (53)!

Psychopathology—assessed by the Hospital Anxiety and Depression Scale (54)—showed low rates of depression (5% above threshold) but elevated rates of anxiety (32% above threshold) (55). Multiple regression analysis of psychopathology and several other scales identified self-efficacy as the most important predictor. Self-efficacy explained 31% variance of anxiety scores, and 18% variance of depression scores (with 74%/54% total explained variance, respectively). Regarding differences between diagnostic subsets patients with oligoarthritis were significantly less anxious than other subsets and experienced less pain, too. Adults with systemic onset JIA had elevated levels of both anxiety and depression.

Compared to the previously mentioned results of adolescents with JIA, this long-term follow-up study reveals a more distressing picture of the disease impact and highlights on the importance of transitional care (see Chapter 16).

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