Paap Muirne C S, Bode Christina, Lenferink Lonneke I M, Terwee Caroline B, van der Palen Job
Department of Research Methodology, Measurement, and Data-Analysis, Behavioral Sciences, University of Twente, P.O. Box 217, 7500 AE, Enschede, The Netherlands,
Qual Life Res. 2015 Jun;24(6):1351-67. doi: 10.1007/s11136-014-0860-z. Epub 2014 Nov 16.
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).
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.
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.
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.
本文旨在从医疗保健专业人员（HCPs）的角度，确定健康相关生活质量（HRQoL）的哪些领域对慢性阻塞性肺疾病（COPD）患者最为重要。
招募了13名荷兰HCPs[6名肺科医生、3名肺科执业护士、2名物理治疗师和2名全科医生；9名男性；平均年龄51.0（标准差=10.6）岁；平均工作年限12.1（标准差=7.2）]，他们均专门从事COPD领域的工作。唯一的纳入标准是HCP必须在治疗COPD患者方面有丰富经验。面对面访谈持续30 - 40分钟。
在被问及与COPD相关的HRQoL时，HCPs的自发陈述中，身体健康成为最重要的主题，其次是社会健康以及应对与COPD相关的不适和限制。最常被选中的患者报告结局测量信息系统（PROMIS）领域是疲劳、身体功能、情感支持和抑郁。如果将与参与社会角色和活动的满意度以及参与社会角色和活动的能力相关的领域合并，它将在疲劳之后位列第二。
在将HCPs选择的领域与最近一项研究中患者选择的领域进行比较时，除了抑郁外，存在高度一致性。我们认为，在开发/选择HRQoL工具时，考虑患者和HCP的观点都很重要。我们的结果可用于为测量COPD患者HRQoL的领域选择以及工具开发提供参考。
