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

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• 作者：Muirne CS Paap (1)
  Christina Bode (2)
  Lonneke IM Lenferink (3) (4)
  Lianne C Groen (3)
  Caroline B Terwee (5)
  Sara Ahmed (6)
  Owis Eilayyan (7)
  Job van der Palen (1) (8)
  
  1. Department of Research Methodology ; Measurement ; and Data-Analysis ; Behavioral Sciences ; University of Twente ; P.O. Box 217 ; 7500 AE ; Enschede ; The Netherlands
  2. Department of Psychology ; Health & Technology ; Behavioral Sciences ; University of Twente ; Enschede ; The Netherlands
  3. University of Twente ; Enschede ; The Netherlands
  4. Current affiliation ; Department of Clinical Psychology ; Behavioural and Social Sciences ; University of Groningen ; Groningen ; The Netherlands
  5. Department of Epidemiology and Biostatistics ; The EMGO Institute for Health and Care Research ; VU University Medical Center ; Amsterdam ; The Netherlands
  6. School of Physical and Occupational Therapy ; Faculty of Medicine ; McGill University ; with concordant appointments at McGill University Health Center鈥檚 Division of Clinical Epidemiology ; and ; the Centre de recherche interdisciplinaire en r茅adaptation ; Constance Lethbridge Rehabilitation Center ; Montr茅al ; Qu茅bec ; Canada
  7. Faculty of Medicine ; School of Physical Therapy ; McGill University ; Montreal ; QC ; Canada
  8. Medical School Twente ; Medisch Spectrum Twente ; Enschede ; The Netherlands
  
• 关键词：HRQoL ; COPD ; Physical functioning ; Physical health ; Social health ; Interview study ; Qualitative research ; PROMIS
• 刊名：Health and Quality of Life Outcomes
• 出版年：2014
• 出版时间：December 2014
• 年：2014
• 卷：12
• 期：1
• 全文大小：409 KB
• 参考文献：1. Chronic obstructive pulmonary disease (COPD) (Fact Sheet No.315). [http://www.who.int/mediacentre/factsheets/fs315/en/index.html]
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• 刊物主题：Quality of Life Research; Quality of Life Research;
• 出版者：BioMed Central
• ISSN：1477-7525

文摘

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.