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Background: Health-related quality of life (HRQoL) is widely used as an outcome measure in the evaluation of treatment interventions in patients with chronic obstructive pulmonary disease (COPD). In order to address challenges associated with existing fixed-length measures (e.g., too long to be used routinely, too short to ensure both content validity and reliability), a COPD-specific item bank (COPD-SIB) was developed.Methods: Items were selected based on literature review and interviews with Dutch COPD patients, with a strong focus on both content validity and item comprehension. The psychometric quality of the item bank was evaluated using Mokken Scale Analysis and parametric Item Response Theory, using data of 666 COPD patients.Results: The final item bank contains 46 items that form a strong scale, tapping into eight important themes that were identified based on literature review and patient interviews: Coping with disease/symptoms, adaptability; Autonomy; Anxiety about the course/end-state of the disease, hopelessness; Positive psychological functioning; Situations triggering or enhancing breathing problems; Symptoms; Activity; Impact.Conclusions: The 46-item COPD-SIB has good psychometric properties and content validity. Items are available in Dutch and English. The COPD-SIB can be used as a stand-alone instrument, or to inform computerised adaptive testing. [ABSTRACT FROM AUTHOR]

Background Numerous instruments 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. 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 health-related quality of life (HRQoL) are most important with respect to Chronic Obstructive Pulmonary Disease (COPD), from the patient perspective. Methods Twenty-one Dutch patients with Chronic Obstructive Pulmonary Disease (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. Results The 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. Conclusion We 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. [ABSTRACT FROM AUTHOR]