Abstract
BackgroundNumerous instruments are available to measure health-related quality of life (HRQoL) in patients with Chronic Obstructive Pulmonary Disease (COPD), covering a wide array of domains ranging from symptoms such as dyspnea, cough and wheezing, to social and emotional functioning. Currently no information or guide is available yet to aid the selection of domains for a particular study or disease population. The aim of this paper is to identify which domains of HRQoL are most important with respect to COPD, from the patient perspective.MethodsTwenty-one Dutch patients with COPD were asked to describe important domains impacted by COPD freely; second, they were presented with cues (domains from the Patient-Reported Outcomes Measurement Information System (PROMIS) framework) and were asked to select the domains that were most relevant to them. During the interview, the patients were asked to indicate in which way the selected domains impact their lives. Both the answers to the open question, and the patient statements motivating nomination of PROMIS domains were coded into themes.ResultsThe most relevant (sub)domains of HRQoL for patients with COPD were: physical health (fatigue, physical functioning), social health (instrumental support, ability to participate in social roles and activities, companionship, and emotional support), and coping with COPD.ConclusionWe identified which domains of HRQoL are most important to patients with COPD. One of these (coping with COPD) is not explicitly covered by PROMIS, or by traditional questionnaires that are used to measure HRQoL in COPD.
Highlights
Numerous instruments are available to measure health-related quality of life (HRQoL) in patients with Chronic Obstructive Pulmonary Disease (COPD), covering a wide array of domains ranging from symptoms such as dyspnea, cough and wheezing, to social and emotional functioning
The main themes physical health and autonomy which emerged from the open question, and the PROMIS domains fatigue and ability to participate in social roles and activities were chosen to illustrate the coding process (Tables 1 and 2, respectively)
Coping with COPD emerged as the second most important theme from the spontaneous statements, while the remaining four PROMIS domains pertained to social health [40]
Summary
Numerous instruments are available to measure health-related quality of life (HRQoL) in patients with Chronic Obstructive Pulmonary Disease (COPD), covering a wide array of domains ranging from symptoms such as dyspnea, cough and wheezing, to social and emotional functioning. COPD cannot be cured; the main goal of COPD treatments is managing symptoms and their effect on the patient’s health-related quality of HRQoL encompasses the physical, functional, emotional, and social well-being of the patient [4]. Many questionnaires are available to measure HRQoL in patients with COPD, covering a wide array of domains ranging from symptoms such as dyspnea, cough and wheezing, to social and emotional functioning (see [5] for an overview), and it can be a challenge to choose the appropriate questionnaire. Short instruments often fail to provide a sufficiently detailed picture of the most relevant aspects of a patient’s HRQoL
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