The use of focus groups in the development of the PROMIS pediatrics item bank

Purpose To understand differences in perceptions of patient-reported outcome domains between children with asthma and children from the general population. We used this information in the development of patient-reported outcome items for the Patient-Reported Outcomes Measurement Information System Pediatrics project. Methods We conducted focus groups composed of ethnically, racially, and geographically diverse youth (8-12, 13-17 years) from the general population and youth with asthma. We performed content analysis to identify important themes. Results We identified five unique and different challenges that may confront youth with asthma as compared to general population youth: (1) They experience more difficulties when participating in physical activities; (2) They may experience anxiety about having an asthma attack at anytime and anywhere; (3) They may experience sleep disturbances and fatigue secondary to their asthma symptoms; (4) Their health condition has a greater effect on their emotional well-being and interpersonal relationships; and (5) Youth with asthma report that asthma often leaves them with insufficient energy to complete their school activities, especially physical activities. Conclusions The results confirm unique experiences for children with asthma across a broad range of health domains and enhance the breadth of all domains when creating an item bank.