OBJECTIVES

A novel online method, Group Concept Mapping (GCM), was used to explore COPD patients’ perspectives on the most frequent symptoms and impacts and most important to treat, and to evaluate the suitability of selected COPD patient-reported questionnaires.

METHODS

GCM began with participants (n=35) stating their symptoms and impacts of COPD using online free text. Statements were then “harmonized” to eliminate duplicates. Next, participants sorted statements into “domains” and rated them on 5-point frequency and treatment importance scales. A concept map was generated using sorting data to reflect how participants sorted concepts into domains. Domain importance was captured by adding “layers” based on ratings data; more layers reflected greater frequency/importance. The selected questionnaires were reviewed to examine overlap with GCM concepts.

RESULTS

Thirty-five US-English moderate-very severe COPD patients participated; mean age was 61.6 years (40-81); 54% female. GCM identified six symptom domains and eight impact domains. The highest rated symptom domains were: respiratory, fatigue, exertion-induced, and impact domains were: activities, physical fatigue, and sleep. Moderate COPD participants rated respiratory and exertion-induced domains as more frequent and more important for treatment than severe/very severe COPD participants (p <.05). Severe/very severe COPD participants rated the activities and physical fatigue impact domains higher on both dimensions (p<.05). Furthermore, GCM concepts relating to respiratory, exertion-induced and physical fatigue domains were captured by the reviewed questionnaires, but concepts relating to cognition, circulation, eating, healthcare use and coping strategies were not.

CONCLUSIONS

Patients with moderate COPD experience similar symptoms and impacts compared with patients with severe/very severe COPD, albeit ratings of frequency and treatment importance differed. Consequently, while the reviewed questionnaires may be used to measure the highest rated symptoms and/or impacts, no single one measured all of these. Combining patient-reported questionnaires is complicated by differences in recall periods and/or response scales leading to use several instruments to cover them.