Paap Muirne C S, Bode Christina, Lenferink Lonneke I M, Groen Lianne C, Terwee Caroline B, Ahmed Sara, Eilayyan Owis, van der Palen Job
Health Qual Life Outcomes. 2014 Jul 9;12:106. doi: 10.1186/s12955-014-0106-3.
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. 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.
Twenty-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.
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.
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.
有多种工具可用于测量慢性阻塞性肺疾病（COPD）患者的健康相关生活质量（HRQoL），涵盖从呼吸困难、咳嗽和喘息等症状到社会和情感功能等广泛领域。目前尚无信息或指南可帮助为特定研究或疾病人群选择领域。本文旨在从患者角度确定HRQoL的哪些领域对COPD最为重要。
21名荷兰COPD患者被要求自由描述受COPD影响的重要领域；其次，向他们展示提示（患者报告结果测量信息系统（PROMIS）框架中的领域），并要求他们选择与自己最相关的领域。在访谈过程中，要求患者指出所选领域以何种方式影响他们的生活。对开放性问题的答案以及促使患者提名PROMIS领域的陈述均编码为主题。
COPD患者HRQoL最相关的（子）领域为：身体健康（疲劳、身体功能）、社会健康（工具性支持、参与社会角色和活动的能力、陪伴和情感支持）以及应对COPD。
我们确定了HRQoL的哪些领域对COPD患者最为重要。其中之一（应对COPD）未被PROMIS或用于测量COPD患者HRQoL的传统问卷明确涵盖。
