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

Job van der Palen⁴  Owis Eilayyan⁵  Sara Ahmed²  Caroline B Terwee⁶  Lianne C Groen³  Lonneke IM Lenferink⁷  Christina Bode¹  Muirne CS Paap⁸ 

[1] Department of Psychology, Health & Technology, Behavioral Sciences, University of Twente, Enschede, The Netherlands;School of Physical and Occupational Therapy, Faculty of Medicine, McGill University; with concordant appointments at McGill University Health Center’s Division of Clinical Epidemiology; and, the Centre de recherche interdisciplinaire en réadaptation, Constance Lethbridge Rehabilitation Center, Montréal, Québec, Canada;University of Twente, Enschede, The Netherlands;Medical School Twente, Medisch Spectrum Twente, Enschede, The Netherlands;Faculty of Medicine, School of Physical Therapy, McGill University, Montreal, QC, Canada;Department of Epidemiology and Biostatistics, The EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands;Current affiliation: Department of Clinical Psychology, Behavioural and Social Sciences, University of Groningen, Groningen, The Netherlands;Department of Research Methodology, Measurement, and Data-Analysis, Behavioral Sciences, University of Twente, Enschede, 7500 AE, The Netherlands

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

Others  :  1164563
DOI  :  10.1186/s12955-014-0106-3

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

【 摘 要 】

Background

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.

Methods

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.

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.

【 授权许可】

   
2014 Paap et al.; licensee Biomed Central

【 图 表 】

Figure 1.

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