Disease Spectrum and Diversity

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Unlike other chronic illnesses like diabetes, rheumatic diseases may vary considerably with respect to symptoms, course of the disease, prognosis, and therapy, all of which contribute to the psychosocial impact. Table 5 gives a list of important disease-related symptoms and factors. Drug-induced symptoms as well as severe functional impairment are associated with a more severe course of the disease. This occurs more often in patients with systemic or polyarticular onset juvenile idiopathic arthritis (JIA) (22,23) as well as in SLE patients (24). Functional impairment not only has implications for daily activities with peers, but may cause problems at school (absenteeism, transportation), too (25,26). Siegel and Baum (27), in an excellent paper on JIA and sexuality, also describe the impact of functional

Table 4 How to Identify Good Adaptation in the Chronically Ill

■ Age-appropriate dependence on family

■ Minimal need for secondary gains from the illness

■ Acceptance of the limits and responsibilities imposed by the disease

■ Development of compensatory sources of satisfaction

Source: Adapted from Ref. 20; cited from Ref. 16.

Table 5 Disease-Related Symptoms and Factors That May Impair Functioning and Psychosocial Maturation and Health

Body imagea Growth failure Pubertal delay

Localized growth anomalies (e.g., a short digit, micrognathia) Joint deformities (including leg-length discrepancies) Drug-induced altered distribution of fat stores

Change in skin appearance and body shape (either pathognomonic: rash, Raynaud's syndrome; or drug-induced: acne, hirsutism, striae, cushingoid appearance) Scars from previous surgery Self-esteem and social maturation Inability to perform household tasks Physical dependence from parents Limited mobility

Functional limitations (due to stiffness, joint deformity, pain, or impaired vision) Reduced fitness Mental health

Impaired body image, self-esteem, and social maturation Pain

Loss of control/sense of helplessness

Parental overprotection ("vulnerable child syndrome")

Lack of sympathetic peers and significant others aSource: Adapted from Ref. (53).

impairment on sexual activities. As regards the sense of helplessness and/or low sense of self-efficacy, patients with rheumatic disease may be more vulnerable than other chronic patients given the fact that—unlike for diabetes and other well-controllable diseases—there is only limited promise that adherence with therapy will prevent future symptoms and flares. Furthermore, there is also a greater risk of unsympathetic reactions from peers and significant others (including teachers): being a young person and suffering from a "disease of elderly people" may provoke insulting reactions from peers. Furthermore, rheumatic symptoms may vary extremely during the course of one day, which may falsely undermine credibility (regarding sick role).

On the other hand, among adolescents with rheumatic diseases, there are also some with minimal or no limitations at all, or whose disease is in remission. This occurs more often in JIA patients with an oligoarticular onset (22,23).

Age at disease manifestation may further act as an important modulating factor (28). Pelkonen (29), for instance, mentioned that disease onset in adolescence may eventually end up as a "disaster" [similarly (30)]. Late disease manifestation characteristically occurs in patients with rheumatoid factor positive JIA, enthesitis related JIA, and SLE.

In other words, there is a tremendous diversity both within and among the JIA groups, as well as among the broader spectrum of rheumatic diseases. This should be kept in mind if studies report on results of "rheumatic" patients.

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