The use of focus groups in the development of the PROMIS pediatrics item bank
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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.
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.
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.
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.
KeywordsAsthma Children Focus groups Patient-reported outcomes Pediatric
National Institutes of Health
Patient-Reported Outcomes Measurement Information System
The University of North Carolina at Chapel Hill
- 1.Reeve, B. (2006). Special issues for building computerized-adaptive tests for measuring patient-reported outcomes: The national institutes of health’s investment in new technology [item banking and computerized adaptive testing: Commentary]. Medical Care, 44(11) Suppl 3, S198–S204.Google Scholar
- 7.Landgraf, J. M., Abetz, L., & Ware, J. E. (1999). The CHQ: A user’s manual, 2nd printing. Boston, MA: HealthAct.Google Scholar
- 8.Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Duer, W., Auquier, P., Power, M., Abel, T., Czemy, L., Mazur, J., Czimbalmos, A., Tountas, Y., Hagquist, C., Kilroe, J., & the European KIDSCREEN Group. (2005). KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research, 5(3), 353–364.CrossRefGoogle Scholar
- 14.Krueger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research (3rd ed.). Thousand Oaks, CA: Sage.Google Scholar
- 16.Layder, D. (1998). Sociological practice: Linking theory and social research. London, UK: Sage.Google Scholar
- 17.Weber, R. P. (1990). Basic content analysis. Beverly Hills, CA: Sage.Google Scholar
- 18.Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Thousand Oaks, CA: Sage.Google Scholar
- 19.Morgan, D., Krueger, R., & King, J. A. (1998). The focus group guidebook (Vols. 1–6). Thousand Oaks, CA: Sage.Google Scholar
- 29.Bloom B., Cohen, R. A., Vickerie, J. L., & Wondimu, E. A. (2003). Summary health statistics for U.S. children: National health interview study, 2001. National Center for Health Statistics. Vital Health Stat, 10(216), 1–54.Google Scholar