Frequently prescribed medications include non-steroidal anti-inflammatory drugs (NSAIDs), which symptomatically relieve pain and improve joint stiffness, and disease-modifying anti-rheumatic drugs (DMARDs), which can suppress disease activity, improve function and reduce joint damage (19,20). Recently, the introduction of anti-tumor necrosis factor (TNF inhibitors or anti-TNF) has made a profound impact on disease control (20,21).
In general, nonadherence rates of children and adolescents with chronic disease have been reported to vary between 25% and 60% across a range of conditions (22), and appear to peak in adolescence (2), with an average prevalence of 50%. There are limited publications specific to children and adolescents with chronic rheumatic diseases and most pertain to juvenile idiopathic arthritis (JIA). However, review of these all indicate that poor adherence to medication is a significant problem. However, prevalence rates differ according to the method of assessment, the criteria used to interpret adequate adherence, the recommended regimen components, and the setting where adherence is assessed (3). None of the available studies used a clinically validated operational definition that indicates what level of nonadherence is associated with poor outcome. These methodological issues preclude firm conclusions.
Two retrospective studies using serum assays found that 45% of children and adolescents with JRA were non-adherent with medication (23,24). In three case-report studies including 5 patients in total, baseline adherence as assessed by parental observation or pill counts ranged from 38% to 59% (25-27). Parent-reported adherence to medication was 84.9% in a study of Feldman et al. (28). In this study in 118 patients, adherence was evaluated as caregiver's response on a 100-mm visual analogue scale to the question of how often they followed treatment recommendations as prescribed by the health care provider (28). Studies using patient self-report demonstrated that adherence with pharmacological treatment is less than optimal with prevalence ranging from 4% to 89% (1,27,29,30).
The prevalence rates found in adolescents with JIA can be compared with the results of a quantitative review on adherence in acute and chronic patient populations (5). Average nonadherence in 22 studies on arthritis was 18.8%, yet no distinction between pediatric and adult patients was made (5). Average nonadherence rate across different disease populations was 24.8%. Based on the observation that one out of the four patients is nonadherent, it can be estimated that an astonishing number of 112.2 million medical visits will result in poor adherence with prescribed medication (5). In this quantitative review, studies of pediatric patients yield higher nonadherence than studies of adult patients (i.e., 29.4% vs. 25.2%, respectively). Moreover, a trend for higher nonadherence in adolescents compared to younger children was observed.
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