Using Qualitative Research to Inform the Development of a Comprehensive Outcomes Assessment for Asthma

• Published in: The patient : patient-centered outcomes research 2009-12, Vol.2 (1), p.269-282
• Main Authors: Turner-Bowker, Diane M, Saris-Baglama, Renee N, Derosa, Michael A, Paulsen, Christine A, Bransfield, Christopher P
• Format: Article
• Language: English
• ISSN: 1178-1653; 1178-1661

BACKGROUND: Qualitative research can inform the development of asthma patient-reported outcome (PRO) measures and user-friendly technologies through defining measurement constructs, identifying potential limitations in measurement and sources of response error, and evaluating usability. OBJECTIVE: The goal of the current study was to inform the development of a comprehensive asthma PRO assessment with input from patients and clinical experts. METHOD: Self-reported adult asthma sufferers recruited from a 3,000 member New England-area research panel participated in either one of three focus groups (N=21) or individual cognitive item debriefing interviews (N=20) to discuss how asthma impacts their health-related quality of life (HRQOL), and provide feedback on a preliminary set of asthma impact survey items and prototype patient report. Focus groups and cognitive interviews were conducted using traditional research principles (e.g., semi-structured interview guide, probing, and think aloud techniques). An Expert Advisory Panel (N=12) including asthma clinical specialists and measurement professionals was convened to review results from the focus group and cognitive interview studies and make recommendations for final survey and report development. RESULTS: Domains of health impacted by asthma included physical (recreation, play, competitive sports, and exercise), social (activities, family relationships), emotional (anger, upset, frustration, anxiety, worry), sleep, role (recreational/leisure activities; work), and sexual functioning. Most items in the impact survey were easily understood, covered important content, and included relevant response options. Items with contradictory examples and multiple concepts were difficult to comprehend. Suggestions were made to expand survey content by including additional items on physical and sexual functioning, sleep, self-consciousness, stigma, and finances. Reports were considered useful and participants saw value in sharing the results with their doctor. Graphic presentation of scores was not always understood; participants preferred tabular presentation of score levels with associated interpretative text. Display of inverse scores for different measures (higher scores equaling better health on one scale and worse health on another) shown on a single page was confusing. The score history section of the report was seen as helpful for monitoring progress over time, particularly for those recently diagnosed with asthma.