Adherence to Non Pharmacological Therapies

Physical therapies commonly used in the treatment of childhood rheumatic diseases include splinting, casting, positioning (e.g., prone lying) and therapeutic exercise of affected limbs (16). They are designed to restore and maintain range of motion, strengthen muscle groups and improve motor skills. Patients with JIA should also regularly attend scheduled clinic appointments and should avoid risk-taking behavior that may hamper their medical condition.

There is a paucity of published literature concerning adherence to non-pharmacological therapies. As such, little is known about the challenges faced by adolescents with JIA or the extent of their nonadherence. It does appear, however, that nonadherence to these non-pharmacological aspects is higher than that to medication (29,31,32) and can cause significant family strain (33).

Physical Therapy

Adherence to exercise is generally suboptimal. Most studies dealing with prescribed exercises rely on interviews that provide quantitative information, such as how many exercises are performed and how often (34). It is questionable whether this is the most valid assessment method. However, the limited studies available have reported overall adherence rates of 53.1% (29) to 67.2% (29,31), and indicated that poor adherence increases with older age (31). Parent-reported prevalence of poor adherence to exercise was 54.1% in the study of Feldman et al. (28). Decreased adherence with physical treatments seems to be associated with school absence (35). The review of Brus et al. (34) reported that exercise adherence ranges between 43% and 65%, but no distinction between adult and pediatric patients was made (34). These numbers appear to be higher compared to the average percentage of adherence for exercise of 72% described in the meta-analysis of DiMatteo (5) on adherence in a variety of chronic diseases, including rheumatoid disorders. Yet, this number should be interpreted with caution, as again no distinction between adolescents and adults has been made.

Occupational Therapy

Adherence in the context of orthopedic aids and adaptations is also under-researched. Studies of adherence with prescriptions for ergonomic measures deal only with the use of wrist splints. Parent-reported nonadherence with splint wearing was 58% in a study of Feldman et al. (28). Similarly, Kyngas (1) found that less than one-fifth (18%) showed good adherence with wearing splints, and over half (53%) had poor adherence. A study of Rapoff et al. (32) found that 43% of 41 children and adolescents that were prescribed splints had negative reactions to wearing them and cited perceived lack of efficacy and embarrassment among peers as the main reasons. This certainly concords with qualitative data that suggests that children and adolescents with JIA place a premium on peer acceptance and are likely to spurn orthoses and supportive equipment that signal them out as "different," despite understanding the benefits they confer (33). Similar numbers were reported in adult patients with rheumatic disorder (34,36).

Avoidance of Specific Risk Factors

In addition to rehabilitative therapies, adolescents with JIA may also be asked to avoid specific behaviors including socially accepted activities that pose specific risk (e.g., participation in contact sports), and experimental activities that pose both a generic health risk and added threat to those on particular immunosuppressive therapies (e.g., teratogenic effect of methotrexate and increased risk of hepatotoxicity for those who concomitantly use alcohol). Again, there has been little systematic study in this area. This may reflect the fact that general health promotion has not sat within the traditional remit of rheumatology health care (37). However, the seriousness of these issues suggests this is an important part of adherence that should be addressed. Indeed, a study of 9268 adolescents in Switzerland (38) found that those with chronic illness were just as likely to engage in experimental behaviors as their healthy counterparts. Other studies have reposted that while adolescents with chronic illnesses are as sexually active as their healthy peers (39,40), they can have a lower level of knowledge, lower prevalence of contraceptive use, and higher risk of negative outcomes including sexually transmitted infections and sexual abuse (40,41). With respect to JIA, a study in the United Kingdom found that 37.6% of young adults with JIA reported themselves to be sexually active prior to transfer to adult rheumatology care by age 18 years (42). Nash et al. (43) found that 30.7% of adolescents with JIA used alcohol, including 23.5% of those for whom methotrexate was prescribed. The mean age of initiation was 13.6 years. Because of the associated health risk, poor adherence with risk-taking behavior merit further research.

Clinic Attendance

Attention at clinic appointments is essential for reviewing treatment, monitoring adherence, and the early detection of morbidity. Unfortunately, the appointment-keeping behavior of adolescents is less than optimal (44) and may have significant implications for the health and well being of habitual non-attendees. The exact prevalence of poor adherence with appointment-keeping in patients with JIA is unknown, yet it can expected to be high: the meta-analysis of DiMatteo (5) reported an average percentage of nonadher-ence to appointments of 34.1% for adult and pediatric patients with a variety of chronic diseases. Similarly, there is little research about the contributory factors in non-attendance in rheumatology clinics. Forgetfulness is often cited as the main reason for non-attendance in adolescent patients (44,45).

Telephone reminders have been shown as an effective method to improve their appointment-keeping (45,46). The factors that influence attendance appear wide-ranging and include demographic issues (such as socio-demographic status, geographical distance, access to transport), perceived relevance, the therapeutic relationship, and the clinical environment (44,47,48,49,50).

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