Traditional outcome research should try to answer the following two questions in future research: (1) does it work under experimental conditions based on randomized clinical trials (efficacy question); and (2) does it work in practice based on quasi-experimental designs (effectiveness question)?
Very few publications on the effectiveness of adherence enhancing interventions in adolescents with chronic rheumatic diseases exist. Few intervention studies to improve adherence in juvenile arthritis have been published (25,26,27,30). All are limited to case reports from the same research group and do not focus exclusively on adolescents. In general, studies have shown evidence for the effectiveness of an intervention that focuses on behavioral strategies, in combination with an educational component (25,26,27,30). A variety of reinforcement-based strategies seem equally effective in enhancing adherence, including a token system and social attention and feedback from family members (25,26,27,30). Randomized controlled trials, however, are scarce. Niedermann et al. (78) performed a literature review to systematically collect randomized controlled trials examining educational and psycho-educational interventions for (adult) patients with rheumatoid arthritis, with focus on their long-term effectiveness. Six educational interventions targeted adherence in various dimensions. There was strong evidence for an increase of long-term adherence in general; yet, the effect for medication taking was moderate (78). Moreover, goals and interventions varied greatly and programmes were organized differently, which made it difficult to determine which were the most successful education interventions (78).
In the absence of good intervention trials, one must rely on meta-analysis and systematic reviews published on other acute and chronic ill patient populations. These reports concluded that educational strategies alone are not effective, and that a high dose combination of educational, behavioral and social support interventions will be most successful (7,79-81).
The limited available evidence in JIA or other adolescent groups with chronic disease on educational, behavioral, psychosocial support, and organizational adherence-enhancing interventions will be discussed in the following section. Table 2 summarizes possible intervention strategies.
Table 2 Interventions to Improve Adherence
Provide information on the disease and its treatment Use verbal and nonverbal materials
Use a stepwise approach adapted to the developmental level, when indicated Monitor the level of understanding Address barriers to adherence and try to find solutions Make patient a partner in the educational process Behavioral interventions
Use interventions to increase self-efficacy and confidence in self-management Reduce the complexity of treatment if possible Use tailoring, cueing, reminders, or medication aids Psychosocial support
Refer to specialized care in case of psychopathology or dysfunction in the patient or the family Include peer groups or support groups Use modern communication tools (e-mail, internet)
Encourage the adolescent to actively participate in planning and decision making Organizational interventions
Build a trust relationship in which patient is an equal partner in treatment Show interest in the person, and not only in the condition Offer patient the choice of who is present during the consultation Address concerns
Maintain continuity with follow-up by the same health-care provider
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