Developmental Influences on Disease Perception and Management

Harrington et al. (21) outlined three important developmental differences between adolescents and children: (1) the conception of their illness becomes more complex and realistic (even though misperceptions and gaps may eventually remain undetected), (2) growing independence and responsibility for therapy (with nonadherence occurring frequently), (3) more pronounced, adult-like pain perception (possibly due to the broader knowledge of the disease and symptoms, which are increasingly being perceived as signs of later impairment).

To date, studies have primarily focused on adherence and pain, rather than the beliefs about illness. Nevertheless, the early studies on disease conception proved to be influential inasmuch as recent research approaches adolescents as "consumers" and "experts" (31-35). This reflects a developmental understanding of adolescents who are now being perceived as individuals with specific needs—and that these needs have to be addressed if interventions and services are to be effective.


Studies on nonadherence usually focus on medication taking (36) and disregard avoidance of risk taking behavior as a further dimension of compliance (37). Given the fact, that experimentation is typically associated with adolescence and early adulthood (11), the paucity of literature on experimentation/risk taking and chronic illness is somewhat puzzling. Frequently, for JIA patients risk taking behavior even includes involvement in common activities like skiing (36). Certainly, there are more obvious risk taking behaviors (38,39), such as smoking, alcohol and drug misuse, unsafe sex and early pregnancy, which remain important considerations in JIA patients, too. Depending upon the medication prescribed there may even be specific adverse effects of risk taking behavior in young people with rheumatic disease. A study of 55 mostly female American adolescents with JIA (mean age 14 years) reported alcohol use in 31% and this was slightly less frequent (24%) in patients currently treated with methotrexate (40). The authors also asked whether or not adolescents, during their regular contacts with the rheumatologist, would occasionally be interviewed alone. Only one in four patients consented! Given that adolescents often limit self-disclosure if their parents are present (30,41) this figure should prompt concerns and emphasizes the importance of providing adolescents opportunities to be seen separately from their parents with assurances of confidentiality (see Chapters 4 and 14).

Adolescent Pain Perception

Pain perception of adolescents has been described as comparable to that of adults rather than children (21). As in adulthood, pain becomes more of a problem for the adolescent with rheumatic disease. A Swedish study (42) on 125 patients with JIA (mean age 14 years) showed that pain was even the most powerful predictor of their well-being (explaining 55% of variance)!

Other recent studies try to elucidate moderating factors of pain perception, particularly the role of pain coping strategies. Two studies (43,44) identified "catastrophizing" as a powerful factor of intensified pain perception whereas "pain control thinking" seemed to be the beneficial counterpart (45). "Catastrophizing" also appeared to be the mediating factor between a positive parental history of pain and the child's own pain perception and poor health (43). The authors of this study suggest that by gathering information from parents about their own pain histories, health care providers may be able to identify children at risk for developing maladaptive pain coping strategies and higher levels of disease-related pain and disability. Another pattern of health related interactions was identified in a recent study on 215 children (mean age 12.4 year) with either headaches, JIA (n = 63) or sickle cell disease and their parents (46). The authors analyzed the children's pain intensity and frequency, their level of anxiety and depression and the parental response style to children's pain behavior as well as functional disability (child and parent rating). Interestingly, they found an interaction of child distress and solicitousness of the parent in response to their child's pain, in that for those children who reported greater depressive and anxiety symptoms, child report of parental solicitousness was associated with greater child-reported functional disability.

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