Identifying key domains of health-related quality of life for patients with chronic obstructive pulmonary disease: interviews with healthcare professionals

Abstract

PURPOSE: The aim of this paper is to identify which domains of health-related quality of life (HRQoL) are most important for patients with chronic obstructive pulmonary disease (COPD), from the perspective of healthcare professionals (HCPs). METHODS: Thirteen Dutch HCPs [six pulmonologists, three pulmonology nurse practitioners, two physiotherapists and two general practitioners; 9 men; mean age 51.0 (SD = 10.6) years; mean years of experience 12.1 (SD = 7.2)] specialized in the field of COPD were recruited. The only inclusion criterion was that the HCP had to have extensive experience in treating COPD patients. The face-to-face interviews took 30-40 min. RESULTS: Physical health emerged as the most important theme from the spontaneous statements that HCPs made when asked about HRQoL in relation to COPD, closely followed by social health and coping with COPD-related complaints and restrictions. The most frequently selected PROMIS domains were fatigue, physical function, emotional support and depression. If the related domains satisfaction with participation in social roles and activities and ability to participate in social roles and activities were to be combined, it would come in second place after fatigue. CONCLUSION: When comparing the domains chosen by HCPs to the ones chosen by patients in a recent study, there is a high degree of agreement, with the exception of depression. We argue that it is important to take into account both patient and HCP perspective when developing/selecting HRQoL instruments. Our results may be used to inform domain selection to measure HRQoL in patients with COPD, as well as instrument development.