The last few decades have seen impressive advances in treatments for rheumatological conditions. Adolescents with chronic rheumatic diseases can now expect to be prescribed a broad range of pharmacological and nonpharmacological therapies to control pain, improve function, and increase health-related quality-of-life. These can involve significant lifestyle changes, including self-medication (including subcutaneous injection), physical exercise, the wearing and use of orthopedic aids and adaptations, avoidance of risk activities, and regular clinic attendance. In most cases, these changes must be maintained over the long-term and rarely offer immediate benefit. They inevitably impinge upon the adolescent's free-time, limiting leisure and peer activities, and can affect appearance (i.e., through the wearing of splints, use of orthopedic aids or side effects of medication).
It is not surprising therefore, that adherence can be challenging for adolescents who are transitioning towards autonomy and self-identity. Indeed, adolescence is a time of major change, and while striving for independence, adolescents with chronic rheumatic diseases may find that their illness keeps them overly tied to their families, physically, emotionally and financially. Growth and sexual maturation may be delayed, affecting teenager's self-esteem and confidence (1). Disease- and treatment-related changes in physical appearance may cause problems in social functioning in a developmental period in which physical appearance is gaining increased importance (1). This is also at a time where responsibility for managing treatment is expected to shift from the parent to the adolescent.
Review of the literature has shown that adherence is poorest in adolescence and reports overall adherence rates of about 50% among adolescents with long-term conditions (1,2). For the adolescent, poor-adherence may result in increased morbidity, such as exacerbations of symptoms, medical complications, as well as greater mortality (3). An indirect consequence of poor adherence is increased school absenteeism, impacting intellectual and social development, and a decrease in overall health-related quality-of-life (3,4). Pediatricians may also incorrectly attribute poor disease control to inadequacies in treatment rather than to poor adherence, and may decide to prescribe more potent medicines with more serious side effects (3,4). Poor adherence also has implications for providers by inflating health care costs, including the expenses from unused medications, and clinical visits and hospitalizations to treat nonadherence-induced complications (3,5). The cost of poor adherence in the United States has been estimated to reach $100 billion annually (6). It is thought that the reduction of nonadherence will have a far greater effect on health than any further improvements in pharmacological treatment (7).
Thus, the need to improve adherence is crucial, both for the utilization of health resources, and, more importantly, the adolescent's current and future well-being. Indeed, it is likely that the health behaviors established in adolescence will track into their adult life. Health-care providers dealing with adolescents with chronic rheumatic diseases need to fully understand the problems of poor adherence and its associated risk factors in order to be able to develop and implement appropriate interventions to tackle them in daily clinical practice. This chapter reviews and summarizes the state-of-the-art evidence on adherence in adolescents with chronic rheumatic diseases. More specifically, the current knowledge on prevalence, risk factors, and possible interventions to improve adherence is summarized with particular attention for the shortcomings in the present literature.
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