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Abstract

Introduction:

Pulmonary rehabilitation implies a comprehensive assessment. Although several outcomes are commonly measured, those are selected mainly by health professionals and researchers, with the voice of patients and informal caregivers being minimally captured. Qualitative studies are fundamental to enhance our knowledge on perspectives of different stakeholders involved in pulmonary rehabilitation.

Objective:

This study aimed to explore the views of different stakeholders on outcomes of pulmonary rehabilitation, contributing to one of the stages of a core outcome set for pulmonary rehabilitation in patients with chronic obstructive pulmonary disease (COPD).

Methods:

Semi-structured interviews were conducted with 12 patients with COPD, 11 informal carers and 10 health professionals. Data were analysed with content analysis, followed by thematic analysis to gain deeper understanding of the different perspectives.

Results:

A total of 44 outcomes were identified, being the most reported ‘improving functional performance’ (67%) and ‘reducing and taking control over dyspnoea’ (64%). Five relevant themes across stakeholders were generated: having a healthy mind in a healthy body; I can(’t) do it; feeling fulfilled; knowing more, doing better and avoiding doctors and expenses. Although perspectives were mostly consensual, some outcomes were only valued by health professionals (e.g. pulmonary function) or by patients and informal carers (e.g. quality of sleep).

Conclusion:

Views of the different stakeholders on outcomes of pulmonary rehabilitation were similar although, some specificities existed. Comprehensive assessments are needed to reflect what is valued by the different stakeholders in pulmonary rehabilitation. This study contributed to a future core outcome set in this field.

Keywords

Outcomes research COPD pulmonary rehabilitation core outcome set

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References

Ries

Bauldoff

Carlin

et al . Pulmonary rehabilitation: joint ACCP/AACVPR evidence-based clinical practice guidelines. Chest 2007; 131(5 Suppl.): 4S–42S.

Spruit

Singh

Garvey

et al . An official American Thoracic Society/European Respiratory Society statement: key concepts and advances in pulmonary rehabilitation. Am J Respir Crit Care Med 2013; 188(8): e13–e64.

Vitacca

Comini

Barbisoni

et al . A pulmonary rehabilitation decisional score to define priority access for COPD patients. Rehabil Res Pract 2017; 2017: 5710676.

Singh

Approaches to outcome assessment in pulmonary rehabilitation. Clin Chest Med 2014; 35(2): 353–361.

Rochester

Spanevello

Heterogeneity of pulmonary rehabilitation: like apples and oranges – both healthy fruit. Eur Respir J 2014; 43(5): 1223–1226.

Williamson

Altman

Blazeby

et al . Developing core outcome sets for clinical trials: issues to consider. Trials 2012; 13: 132.

Celli

Decramer

Wedzicha

et al . An official American Thoracic Society/European Respiratory Society statement: research questions in COPD. Eur Respir Rev 2015; 24(136): 159–172.

The Lancet Respiratory Medicine. Maximising the data potential in COPD research. Lancet Respir Med 2017; 5(7): 535.

Rochester

Vogiatzis

Holland

et al . An official American Thoracic Society/European Respiratory Society Policy statement: enhancing implementation, use, and delivery of pulmonary rehabilitation. Am J Respir Crit Care Med 2015; 192(11): 1373–1386.

10.

Williamson

Altman

Bagley

et al . The COMET handbook: version 1.0. Trials 2017; 18(Suppl. 3): 280.

11.

Hardy

Coe

Participants perspectives of pulmonary rehabilitation: the role of peer support. Eur Respir J 2011; 38: 3657.

12.

Harrison

Lee

Elliott-Button

et al . The role of pain in pulmonary rehabilitation: a qualitative study. Int J Chron Obstruct Pulmon Dis 2017; 12: 3289–3299.

13.

Bryant

Mansfield

Boyes

et al . Involvement of informal caregivers in supporting patients with COPD: a review of intervention studies. Int J Chron Obstruct Pulmon Dis 2016; 11: 1587–1596.

14.

Marques

Jacome

Cruz

et al . Effects of a pulmonary rehabilitation program with balance training on patients with COPD. J Cardiopulm Rehabil Prev 2015; 35(2): 154–158.

15.

Woodhead

Blasi

Ewig

et al . Guidelines for the management of adult lower respiratory tract infections – full version. Clin Microbiol Infect 2011; 17(Suppl. 6): E1–E59.

16.

Trivedi

Bryson

Udris

et al . The influence of informal caregivers on adherence in COPD patients. Ann Behav Med 2012; 44(1): 66–72.

17.

World Health Organization and Alzheimer’s Disease International. Dementia: a public health priority. Geneva: WHO, 2012.

18.

Saunders

Sim

Kingstone

et al . Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant 2018; 52: 1893–1907.

19.

Miller

Hankinson

Brusasco

et al . Standardisation of spirometry. Eur Respir J 2005; 26(2): 319–338.

20.

Global Initiative for Chronic Obstructive Lung Disease (GOLD). Global strategy for the diagnosis, management and prevention of COPD. GOLD, 2018. Global initiative for chronic obstructive lung disease, Inc.

21.

Kallio

Pietila

Johnson

et al . Systematic methodological review: developing a framework for a qualitative semi-structured interview guide. J Adv Nurs 2016; 72(12): 2954–2965.

22.

Gill

Stewart

Treasure

et al . Methods of data collection in qualitative research: interviews and focus groups. Br Dent J 2008; 204(6): 291–295.

23.

Jamshed

Qualitative research method-interviewing and observation. J Basic Clin Pharm 2014; 5(4): 87–88.

24.

Pope

vanRoyen

Baker

Qualitative methods in research on healthcare quality. Qual Saf Health Care 2002; 11(2): 148–152.

25.

Zamawe

FC.

The implication of using NVivo software in qualitative data analysis: evidence-based reflections. Malawi Med J 2015; 27(1): 13–15.

26.

Hsieh

Shannon

SE.

Three approaches to qualitative content analysis. Qual Health Res 2005; 15(9): 1277–1288.

27.

Braun

Clarke

Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77–101.

28.

Guo

S-E

Bruce

Improving understanding of and adherence to pulmonary rehabilitation in patients with COPD: a qualitative inquiry of patient and health professional perspectives. PLoS ONE 2014; 9(10): e110835.

29.

McHugh

ML.

Interrater reliability: the kappa statistic. Biochem Med 2012; 22(3): 276–282.

30.

Jacome

Marques

Pulmonary rehabilitation for mild COPD: a systematic review. Respir Care 2014; 59(4): 588–594.

31.

Neves

Reis

Gonçalves

TR.

Home or community-based pulmonary rehabilitation for individuals with chronic obstructive pulmonary disease: a systematic review and meta-analysis. Cad Saúde Pública 2016; 32: 1–21.

32.

McCarthy

Casey

Devane

et al . Pulmonary rehabilitation for chronic obstructive pulmonary disease. Cochrane Database Syst Rev 2015; 2: CD003793.

33.

Miravitlles

Pena-Longobardo

Oliva-Moreno

et al . Caregivers’ burden in patients with COPD. Int J Chron Obstruct Pulmon Dis 2015; 10: 347–356.

34.

Paddison

Effing

Quinn

et al . Fatigue in COPD: association with functional status and hospitalisations. Eur Respir J 2013; 41(3): 565–570.

35.

Rodgers

Loitz

CC.

The role of motivation in behavior change: how do we encourage our clients to be active?

ACSM’s Health Fit J 2009; 13: 7–12.

36.

Sahin

Naz

Why are COPD patients unable to complete the outpatient pulmonary rehabilitation program. Chron Respir Dis 2018; 15(4): 411–418.

37.

Cruz

Marques

Figueiredo

Impacts of COPD on family carers and supportive interventions: a narrative review. Health Soc Care Community 2015; 25: 11–25.

38.

Marques

Jacome

Cruz

et al . Family-based psychosocial support and education as part of pulmonary rehabilitation in COPD: a randomized controlled trial. Chest 2015; 147(3): 662–672.

39.

Selzler

Rodgers

Berry

et al . The importance of exercise self-efficacy for clinical outcomes in pulmonary rehabilitation. Rehabil Psychol 2016; 61(4): 380–388.

40.

JefferyMador

Kufel

Pineda

Quadriceps fatigue after cycle exercise in patients with chronic obstructive pulmonary disease. Am J Respir Crit Care Med 2000; 161(2 Pt 1): 447–453.

41.

Franssen

Rochester

CL.

Comorbidities in patients with COPD and pulmonary rehabilitation: do they matter. Eur Respir Rev 2014; 23(131): 131–141.

42.

Dinglas

Chessare

Davis

et al . Perspectives of survivors, families and researchers on key outcomes for research in acute respiratory failure. Thorax 2018; 73(1): 7–12.

43.

Berends

Johnston

Using multiple coders to enhance qualitative analysis: the case of interviews with consumers of drug treatment. Addict Res Theor 2005; 13: 373–381.

44.

Houben-Wilke

Augustin

Vercoulen

et al . COPD stands for complex obstructive pulmonary disease. Eur Respir Rev 2018; 27(148): 180027.

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Triangulated perspectives on outcomes of pulmonary rehabilitation in patients with COPD: a qualitative study to inform a core outcome set

Abstract

Introduction:

Objective:

Methods:

Results:

Conclusion:

Keywords

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References

Supplementary Material