Skip to main content

Main menu

  • Home
  • Current issue
  • Early View
  • Archive
  • Authors/reviewers
    • Instructions for authors
    • Submit a manuscript
    • COVID-19 submission information
    • Institutional open access agreements
    • Peer reviewer login
  • Alerts
  • Subscriptions
  • ERS Publications
    • European Respiratory Journal
    • ERJ Open Research
    • European Respiratory Review
    • Breathe
    • ERS Books
    • ERS publications home

User menu

  • Log in
  • Subscribe
  • Contact Us
  • My Cart

Search

  • Advanced search
  • ERS Publications
    • European Respiratory Journal
    • ERJ Open Research
    • European Respiratory Review
    • Breathe
    • ERS Books
    • ERS publications home

Login

European Respiratory Society

Advanced Search

  • Home
  • Current issue
  • Early View
  • Archive
  • Authors/reviewers
    • Instructions for authors
    • Submit a manuscript
    • COVID-19 submission information
    • Institutional open access agreements
    • Peer reviewer login
  • Alerts
  • Subscriptions

Patients' perspective on pulmonary rehabilitation: experiences of European and American individuals with chronic respiratory diseases

Carolyn L. Rochester, Ioannis Vogiatzis, Pippa Powell, Sarah Masefield, Martijn A. Spruit
ERJ Open Research 2018 4: 00085-2018; DOI: 10.1183/23120541.00085-2018
Carolyn L. Rochester
1Section of Pulmonary, Critical Care and Sleep Medicine, Yale University School of Medicine, New Haven, CT, USA
2VA Connecticut Healthcare System, West Haven, CT, USA
9Both authors contributed equally
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • For correspondence: carolyn.rochester@yale.edu
Ioannis Vogiatzis
3National and Kapodistrian University of Athens, Faculty of Physical Education and Sports Sciences, Athens, Greece
4Dept of Sport, Exercise and Rehabilitation, School of Health and Life Sciences, Northumbria University Newcastle, Newcastle Upon Tyne, UK
9Both authors contributed equally
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Pippa Powell
5European Lung Foundation, Sheffield, UK
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Sarah Masefield
5European Lung Foundation, Sheffield, UK
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Martijn A. Spruit
6Dept of Research and Education, CIRO+, Center of Expertise for Chronic Organ Failure, Horn, The Netherlands
7Dept of Respiratory Medicine, Maastricht University Medical Centre, NUTRIM School of Nutrition and Translational Research in Metabolism, Maastricht, The Netherlands
8REVAL - Rehabilitation Research Center, BIOMED - Biomedical Research Institute, Faculty of Rehabilitation Sciences, Hasselt University, Diepenbeek, Belgium
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • ORCID record for Martijn A. Spruit
  • Article
  • Figures & Data
  • Info & Metrics
  • PDF
Loading

Abstract

Pulmonary rehabilitation benefits people with chronic respiratory diseases, yet few eligible patients enrol. People with chronic lung diseases are often unaware of or lack access to PR. This is an important healthcare disparity that should be addressed. http://ow.ly/2HER30mxLLj

To the Editor:

Despite the fact that pulmonary rehabilitation (PR) is the most powerful nonpharmacological intervention to improve the symptoms, exercise capacity and quality of life of people living with chronic lung disease [1], fewer than 2% of eligible patients enrol [2, 3]. While preparing a joint American Thoracic Society (ATS)/European Respiratory Society (ERS) Policy Statement on pulmonary rehabilitation [4], we developed a survey to better understand patients' perspectives on PR, and to identify challenges faced both by patients who have taken part in PR and those who might be eligible but have not had the opportunity. The survey was disseminated via the European Lung Foundation/ERS and ATS Public Advisory Roundtable professional patient networks, and via the COPD Foundation and Pulmonary Fibrosis Foundation to patients with a wide range of chronic lung diseases. The survey was available online from July, 2014 to November, 2014 in 10 languages (Dutch, English, Flemish, French, German, Greek, Italian, Polish, Portuguese and Spanish). Responses were received from 1685 people (73% female) with self-reported chronic lung disease in 29 countries (USA: 71.1%; Europe: 27.4%; others: 1.5%) and were included in the analyses (table 1).

View this table:
  • View inline
  • View popup
TABLE 1

Patient survey on experiences relating to pulmonary rehabilitation (PR)

A majority of patients were 61 years of age or older (54.7%). 92% of respondents thought that PR should be a part of healthcare services available to all patients that might benefit, yet 46% of respondents had never taken part in a PR programme. 60% reported having experienced challenges to taking part in PR (table 1). Approximately two-fifths of respondents reported that their healthcare provider had never told them about PR, or the benefits of PR for people living with chronic lung disease. 18% felt they did not have enough information to decide about participating or were not sure it would help them. Nearly one-fifth of respondents faced logistical challenges, such as no PR service available or lack of insurance coverage. Emotional challenges were also an obstacle to participation.

Of the respondents who had participated in PR, most had heard about it through their healthcare provider (table 1). A majority of these individuals reported improvements in physical functioning in daily life, mood or sense of emotional wellbeing, knowledge about their lung condition, control of symptoms, social functioning, or a combination thereof (table 1). PR participants were asked to respond to the question “What would you say to someone considering attending a PR session for the first time?”. Representative responses included: “Absolutely do it!”, “A must!”, “It allows you to move around and breathe better”, “Absolutely go all in!”, “Be open about your symptoms and condition”, “Begin as soon as possible”, “Best thing I ever did to help manage this disease”, “Don't be a damn fool – go and help yourself”, “Don't be scared”, “It will change your life”, and “It works!”. None of the respondents made negative comments or recommended against participation in PR. Patients who had participated also offered suggestions as to how to improve the PR experience. Representative suggestions included having PR facilities closer to home, having appropriate funding and lower “out of pocket” costs, a longer duration of PR programme or the opportunity to do two PR programmes per year, opportunity to transition to a maintenance programme, having the option for PR sessions during evenings or the weekend days, addition of yoga and/or meditation to the PR programme, and the importance of individualisation of the PR programme to each patient's condition (including the educational component and need for staff to have knowledge of respiratory disorders other than chronic obstructive pulmonary disease (COPD)). Notably, three-fifths of respondents reported that they experienced one or more challenges to taking part in PR.

In 2015, the official ATS/ERS policy statement on enhancing implementation, use and delivery of pulmonary rehabilitation highlighted the need to increase patients' and healthcare providers' awareness and knowledge of PR, as well as to increase patients' access to PR [4]. For example, it was recommended that professional societies and patient advocacy and education experts develop education materials for people living with chronic respiratory disease regarding the process and benefits of PR. Public awareness campaigns are also needed. The current survey data confirms the need for greater healthcare professionals' knowledge and awareness of PR to foster patient referrals, and for new PR services to reduce travel distance and transportation problems, for increased insurance coverage for PR, and expanded PR services that do not focus solely on COPD.

Our survey-based study has some limitations. Given that the majority of respondents were from Europe and North America, the generalisability of our findings to other first world and/or developing countries is unknown. Moreover, the participation and engagement of many of our respondents in patient networks and health societies might have introduced bias into the survey findings, since these individuals may have been especially motivated to take control of and manage their respiratory disease. Future efforts to learn more about the perspectives of individuals from other countries underrepresented in the present survey, and those not engaged in patient networks or health societies would be both informative and beneficial.

In keeping with the ATS/ERS policy statement on PR [4], however, this survey demonstrates clearly that people with chronic lung diseases in Europe and the USA want to learn about and be able to participate in PR, yet are often unaware of it, its benefits or lack access to it. Importantly, these findings are probably “the tip of the iceberg”, since only people with computer and internet access could respond to this survey. Referrals, access to and uptake of PR are likely significantly further diminished among those from more remote, under-served or poverty-stricken areas [5]. We believe this is an important healthcare disparity that should be addressed by healthcare providers and health systems in the years to come.

Footnotes

  • Author contributions: Each of the authors listed played an essential role in the development of the patient survey, analysis of the findings, and development of this manuscript.

  • Conflict of interest: Carolyn L. Rochester has served on scientific advisory boards for COPD for Glaxo-Smith Kline, Inc, and Boehringer Ingelheim Pharmaceuticals, Inc. She has participated in COPD-related clinical trials sponsored by GSK and Astra-Zeneca Pharmaceuticals, Inc. Carolyn L. Rochester co-chaired the ATS-ERS joint task force on policy in pulmonary rehabilitation, and from 2015–2017 served as the chair of the ATS Assembly on pulmonary rehabilitation. She does not believe any of the above represent conflicts of interest in regard to the currently submitted research letter.

  • Conflict of interest: I. Vogiatzis has nothing to disclose.

  • Conflict of interest: P. Powell is an employee of the European Lung Foundation.

  • Conflict of interest: S. Masefield was an employee of the European Lung Foundation at the time of writing.

  • Conflict of interest: M.A. Spruit reports personal fees from Boehringer Ingelheim, GSK and AstraZeneca, and grants from Netherlands Lung Foundation, outside the submitted work.

  • Support statement: This patient survey was funded by the American Thoracic Society and European Respiratory Society. Funding information for this article has been deposited with the Crossref Funder Registry.

  • Received June 11, 2018.
  • Accepted October 19, 2018.
  • Copyright ©ERS 2018

This article is open access and distributed under the terms of the Creative Commons Attribution Non-Commercial Licence 4.0.

References

  1. ↵
    1. Spruit MA,
    2. Singh SJ,
    3. Garvey C, 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: e13–e64.
    OpenUrlCrossRefPubMed
  2. ↵
    1. Brooks D,
    2. Sottana R,
    3. Bell B, et al.
    Characterization of pulmonary rehabilitation programs in Canada in 2005. Can Respir J 2007; 14: 87–92.
    OpenUrlCrossRefPubMed
  3. ↵
    1. Wadell K,
    2. Janaudis Ferreira T,
    3. Arne M, et al.
    Hospital-based pulmonary rehabilitation in patients with COPD in Sweden–a national survey. Respir Med 2013; 107: 1195–1200.
    OpenUrlCrossRefPubMed
  4. ↵
    1. Rochester CL,
    2. Vogiatzis I,
    3. Holland AE, 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: 1373–1386.
    OpenUrlCrossRefPubMed
  5. ↵
    1. Johnston KN,
    2. Williams MT
    . Turning a challenge into an opportunity: pulmonary rehabilitation and socioeconomic deprivation. Thorax 2017; 72: 493–494.
    OpenUrlFREE Full Text
PreviousNext
Back to top
Vol 4 Issue 4 Table of Contents
ERJ Open Research: 4 (4)
  • Table of Contents
  • Index by author
Email

Thank you for your interest in spreading the word on European Respiratory Society .

NOTE: We only request your email address so that the person you are recommending the page to knows that you wanted them to see it, and that it is not junk mail. We do not capture any email address.

Enter multiple addresses on separate lines or separate them with commas.
Patients' perspective on pulmonary rehabilitation: experiences of European and American individuals with chronic respiratory diseases
(Your Name) has sent you a message from European Respiratory Society
(Your Name) thought you would like to see the European Respiratory Society web site.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
Print
Citation Tools
Patients' perspective on pulmonary rehabilitation: experiences of European and American individuals with chronic respiratory diseases
Carolyn L. Rochester, Ioannis Vogiatzis, Pippa Powell, Sarah Masefield, Martijn A. Spruit
ERJ Open Research Oct 2018, 4 (4) 00085-2018; DOI: 10.1183/23120541.00085-2018

Citation Manager Formats

  • BibTeX
  • Bookends
  • EasyBib
  • EndNote (tagged)
  • EndNote 8 (xml)
  • Medlars
  • Mendeley
  • Papers
  • RefWorks Tagged
  • Ref Manager
  • RIS
  • Zotero
Share
Patients' perspective on pulmonary rehabilitation: experiences of European and American individuals with chronic respiratory diseases
Carolyn L. Rochester, Ioannis Vogiatzis, Pippa Powell, Sarah Masefield, Martijn A. Spruit
ERJ Open Research Oct 2018, 4 (4) 00085-2018; DOI: 10.1183/23120541.00085-2018
Reddit logo Technorati logo Twitter logo Connotea logo Facebook logo Mendeley logo
Full Text (PDF)

Jump To

  • Article
    • Abstract
    • Footnotes
    • References
  • Figures & Data
  • Info & Metrics
  • PDF

Subjects

  • Respiratory clinical practice
  • Tweet Widget
  • Facebook Like
  • Google Plus One

More in this TOC Section

  • rs2070600 SNP regulates AGER splicing and sputum sRAGE
  • Procoagulant microparticles and COVID-19
  • Cancer referral and interventional pulmonology during COVID-19
Show more Original research letters

Related Articles

Navigate

  • Home
  • Current issue
  • Archive

About ERJ Open Research

  • Editorial board
  • Journal information
  • Press
  • Permissions and reprints
  • Advertising

The European Respiratory Society

  • Society home
  • myERS
  • Privacy policy
  • Accessibility

ERS publications

  • European Respiratory Journal
  • ERJ Open Research
  • European Respiratory Review
  • Breathe
  • ERS books online
  • ERS Bookshop

Help

  • Feedback

For authors

  • Instructions for authors
  • Publication ethics and malpractice
  • Submit a manuscript

For readers

  • Alerts
  • Subjects
  • RSS

Subscriptions

  • Accessing the ERS publications

Contact us

European Respiratory Society
442 Glossop Road
Sheffield S10 2PX
United Kingdom
Tel: +44 114 2672860
Email: journals@ersnet.org

ISSN

Online ISSN: 2312-0541

Copyright © 2023 by the European Respiratory Society