Identifying key domains of health-related quality of life for patients with Chronic Obstructive Pulmonary Disease: the patient perspective

Health and Quality of Life Outcomes

Research

Caroline B Terwee¹  Christina Bode²  Muirne CS Paap³  Job van der Palen⁴  Owis Eilayyan⁵  Sara Ahmed⁶  Lianne C Groen⁷  Lonneke IM Lenferink⁸ 

[1]Department of Epidemiology and Biostatistics, The EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands

[2]Department of Psychology, Health & Technology, Behavioral Sciences, University of Twente, Enschede, The Netherlands

[3]Department of Research Methodology, Measurement, and Data-Analysis, Behavioral Sciences, University of Twente, 7500, Enschede, AE, The Netherlands

[4]Department of Research Methodology, Measurement, and Data-Analysis, Behavioral Sciences, University of Twente, 7500, Enschede, AE, The Netherlands

[5]Medical School Twente, Medisch Spectrum Twente, Enschede, The Netherlands

[6]Faculty of Medicine, School of Physical Therapy, McGill University, Montreal, QC, Canada

[7]School of Physical and Occupational Therapy, Faculty of Medicine, McGill University

[8] with concordant appointments at McGill University Health Center’s Division of Clinical Epidemiology

[9] and, the Centre de recherche interdisciplinaire en réadaptation, Constance Lethbridge Rehabilitation Center, Montréal, Québec, Canada

[10]University of Twente, Enschede, The Netherlands

[11]University of Twente, Enschede, The Netherlands

[12]Department of Clinical Psychology, Behavioural and Social Sciences, University of Groningen, Groningen, The Netherlands

关键词: HRQoL;    COPD;    Physical functioning;    Physical health;    Social health;    Interview study;    Qualitative research;    PROMIS;   

DOI  :  10.1186/s12955-014-0106-3

 received in 2014-03-17, accepted in 2014-06-19,  发布年份 2014

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© Paap et al.; licensee Biomed Central 2014