In recent years, patient-centered care has received more attention, with studies indicating improved health outcomes when mutual respect and shared responsibility are fostered between physician and patient. One systematic review found that the top priorities for adult patients were humaneness, competence and accuracy, and shared decision making. The benefits of patient-centered care for children and adolescents are less well understood. Britto and colleagues investigated the health care preferences of adolescents with chronic illnesses.
The study was conducted in three phases. This study reports the results of the first two phases. In the first phase, focus groups were conducted to help generate questionnaire materials. These focus groups included adolescents with chronic illnesses such as inflammatory bowel disease and cystic fibrosis. A questionnaire using Likert scale ratings was developed, with questions representing health care experiences that were considered universally and variably desirable, which were ranked in order of importance and preference. In the second phase, the questionnaire was pilot-tested among 155 adolescents with at least a two-year history of chronic disease. The results of the survey took into account pubertal maturation, cognitive development, health-related quality of life, risk behaviors, and demographic factors.
Although no statistical analysis of item mean importance was undertaken, in terms of quality of care, adolescents gave the highest priority to items such as honesty, attention to pain, and physician knowledge of the patient’s condition, whereas items relating to office environment were rated lowest. In terms of communication, adolescents valued receiving explanations directly rather than through their parents and being able to speak privately with their physicians. When the questionnaire items were assigned to categories, the respect/trust category received the highest item ratings relating to perceived quality of care, followed by power/control and finally by closeness/caring.
This study shows that among adolescents with chronic illness, physician honesty and the ability to participate in their own care were rated as the most important items. The physician’s attention to pain and knowledge of the patient’s’ disease were also ranked as important. These findings indicate that physicians caring for such adolescents should focus on communication skills and that pain control should be prioritized at the organizational level of care.