Subjects and Data Collection
We recruited 52 consecutive patients cared for in the Pediatric Rheumatology Clinic at the University of California, San Francisco (UCSF) between February and April of 2009. The UCSF Pediatric Rheumatology Clinic has a wide referral base, caring for patients with a spectrum of rheumatic diseases throughout Northern California. In 2009 there were approximately 1600 outpatient clinic visits. Patients are cared for up to age 21, at which point they are transferred to adult providers, either at UCSF or in the community.
Criteria for inclusion included age 13 through 20 years, and a confirmed diagnosis of chronic rheumatic disease that would require transition to an adult specialist. Exclusion criteria were inability to speak or read English and cognitive impairment that would prevent future independence in health care management. No compensation for participation was provided. During the recruitment period, 16 patients who met inclusion and exclusion criteria failed to present for a scheduled appointment.
Patients were recruited from all clinic sessions following a convenience sampling strategy. Informed consent was obtained using a protocol approved by the University of California, San Francisco Committee on Human Research. Completion of the visit took approximately 30 minutes and the majority of patients approached agreed to participate. During the recruitment period 87 patients who met inclusion criteria were seen in clinic and 60% were enrolled. Participants completed a transition-readiness survey that included multiple choice, Likert scale, and free-response questions [13–16]. Subjects completed the surveys at a single clinic visit.
Outcome Measures
Disease self-management was assessed in two domains: independence in self-management tasks and self-reported medication adherence. Independence in self-management tasks was assessed with a 15-question tool, which was adapted from the California Healthy and Ready to Work Health Care Transition Guide [13]. Subjects were asked to report whether a given health care task was typically completed independently, completed with some assistance, or completed by someone else. Subjects were considered proficient if they could complete a task without any assistance. Health care tasks included carrying an insurance card, refilling prescriptions, and keeping a calendar of appointments. Medication adherence was assessed with 3 multiple-choice questions developed by the investigators. The first asked whether doses of medication were missed. The second assessed frequency of missed doses. The third asked why subjects missed doses. Subjects were defined as adherent if they reported taking all doses of their medication in a typical week.
Predictors of Self-Management
Predictors of interest included medication regimen knowledge, disease perception, self-care agency, demographics, and health status. To assess medication regimen concordance, patients were asked to provide the name, dosing regimen, and purpose for each of their medications. This patient-generated list was compared to the medication list in the clinic note from the day the survey was administered. Concordance for medication names, dosing intervals, and purposes were separately calculated as the percent of correct responses. For example, if a patient was prescribed 3 medications and listed the correct name for 3, the correct dosing interval for 2, and the correct purpose for 1, then concordance for name, dosing interval and purpose would be calculated as 100%, 67% and 33%, respectively. In assessing concordance for medication purpose, responses were scored as correct if answers demonstrated any degree of understanding of medication purpose.
Cognitive and emotional representations of illness were assessed with the Brief Illness Perception Questionnaire (Brief IPQ). Research has demonstrated the importance of illness representations in adaptation to chronic disease [16]. The first 8 questions of the Brief IPQ evaluate independent aspects of illness perception on a 0-10 Likert scale: consequences of illness, expected duration of illness, ability to personally control symptoms, ability of treatment to control symptoms, influence of illness on personal identity, concern about illness, understanding of illness, and emotional response to illness. The Brief IPQ has been validated in populations with diabetes, asthma, renal disease, and minor illnesses. It has been used in both adolescents and adults [14].
Self-care agency has been defined as "the power of an individual to engage in estimative and productive operations essential for self-care" [15]. This was assessed with the Exercise of Self-Care Agency (ESCA), a 35-item self-report questionnaire on a 5-point Likert scale. Total score ranges from 0-140. Higher scores have been associated with positive health behaviors [15]. The ESCA has been validated in multiple populations, including a cohort of American high school students [17].
Finally, 10 items assessed additional patient and disease characteristics that may mediate disease self-management. Demographics reported included age, gender and race. Disease-related factors included diagnosis and disease duration. Disease activity was assessed on a 0-10 Likert scale. Chart review was performed to confirm self-reported diagnosis and obtain additional disease-related data.
Statistical Analysis
Summary statistics were used to describe all survey domains. Bivariate associations between self-reported medication adherence and other survey measures were assessed using the Student's t-test for normally distributed data, and the Wilcoxon rank-sum test for non-parametric data. Categorical associations were assessed using the Fisher exact test. In order to assess which self-care skills improve with age and which do not, independence in self-management tasks was compared between subjects age 13-16 and 17-20 using the chi-squared test. These age cut points were chosen in order to create groups of older and younger adolescents which could be applied across all measures, reflecting the developmental changes that occur in adolescence. Statistical analysis was performed using Stata version 11 for Macintosh (StataCorp LP, College Station, TX, USA).