Health care preferences and priorities of adolescents with chronic illnesses

Background. Efforts to make health care for adolescents with chronic illnesses more patient-centered must be grounded in an understanding and clear measures of adolescents' preferences and priorities. Objective. To develop a measure of health care preferences of adolescents with chronic illnesses and to determine demographic, developmental, and health factors associated with adolescents' preferences. Design. Mixed-method questionnaire development and survey. Setting. Subspecialty clinics of a tertiary care children's hospital. Participants. All adolescents (age: 11-19 years) with juvenile rheumatoid arthritis, sickle cell disease, inflammatory bowel disease, or cystic fibrosis of at least 2-year duration who were being treated at the participating center were eligible to participate, and 155 of 251 did so (62%). The participants had a mean age of 15.5 +/- 2.4 years, 45% were male, and 75% were white. Intervention. None. Main Outcome Measures. Ratings of 65 items related to quality of care and 17 items related to physician-patient communication styles. Results. An 82-item questionnaire, devised from qualitative analysis of focus group results, contained 65 Likert scale items that adolescents considered important for health care quality and 17 forced-choice items related to adolescents' preferences for communication. Among the first 65 items, the group of questions related to physician trust and respect had the highest rating of 5.24 +/- 0.62 of 6, followed by patient power and control (mean rating: 4.72 +/- 0.77) and then caring and closeness in the patient-doctor relationship (mean rating: 4.19 +/- 0.91). For the communication items, the adolescents, on average, preferred communication directly to them rather than to their parents and were nearly neutral regarding physicians' inquiries about personal issues. Conclusions. Participants rated aspects of interpersonal care (especially honesty, attention to pain, and items related to respect) as most important in their judgments of quality. As in most previous studies of adults, technical aspects of care were also rated highly, suggesting that adolescents understand and value both scientific and interpersonal aspects of care.