Our findings provide insight into self-management proficiency and medication adherence among adolescents with chronic rheumatic disease. While this cohort showed good progress towards achieving independence in disease-management tasks in several domains, deficits were evident in other areas. Furthermore, older patients did not demonstrate an increase in proficiency in several areas as compared to their younger peers. Lack of improvement in self-management independence with increasing age suggests that adolescents are not mastering certain skills critical to self-management of chronic illness. Tasks that are most challenging for young patients involve interaction with adult-oriented systems and organizational skills, such as calling a medical office to schedule appointments, keeping a calendar, and maintaining a personal medical file.
While interventions to improve self-management have been shown to improve health outcomes and quality of life in both adults and children , these programs are not widely implemented. Data from several studies suggests that patient education interventions for CSHCN can be effective in improving health outcomes and decreasing loss to follow-up in the transition period . Like many institutions, UCSF lacks a formal transition program for adolescents with chronic illness. Patients are expected to master disease self-management skills through parental coaching at home and physician encouragement as a part of routine care. However, our data suggest that this approach is not sufficient to achieve independence in all self-management skills in these older adolescents who are approaching transition.
Approximately half of our patients report imperfect adherence to medications, which is similar to other reported adherence rates among adolescents with chronic illness. The most common reason provided for missing medications was forgetfulness, a finding that has been reported previously . Few subjects admit to intentionally skipping doses of medication, though subjects may be hesitant to disclose intentional non-adherence. Understanding the cause of medication non-adherence is important because while medication reminders may be effective for patients who forget to take their medications, they are unlikely to improve adherence if patients actively choose not to take their medications. Automated medication reminders have been studied extensively among adults with chronic disease, with some evidence of success .
With regard to predictors of self-reported medication adherence, accurately reporting the medication names and dosing regimens did not correlate with adherence. Interestingly, knowledge of medication purpose fell at two extremes, with the majority of patients demonstrating either very good understanding of the indications for their medications, or very poor understanding. It may be that some subjects have not been sufficiently engaged in their medical care or have not been willing to engage, and therefore lack understanding of the purposes of their medications. Other patients with pediatric-onset disease may have not be aware of the purpose of medications that they have taken since early childhood, when information about medications was directed towards the parent rather than the patient.
This study has several important limitations. Our results are derived from English-speaking patients at a single U.S. center and thus may not be generalizable to all practices. However, since UCSF is a Title V referral site, this study does draw from a diverse patient population representing Northern California. While subjects were recruited consecutively, our population may be biased towards more adherent patients, since those who did not appear for their appointments did not have the opportunity to participate in the study. Data on adherence and self-care practices were obtained via self-report, which is simple and cost-effective but may be subject to recall bias and social desirability bias . In addition, the adherence measures used were developed by the authors and not tested prior to use. Our sample size was also small; however, rheumatic diseases in children are relatively rare. Finally, quantitative analysis may not be able to fully and accurately describe complex behavior around adherence.