Skip to main content

Main menu

  • Home
  • Current issue
  • ERJ Early View
  • Past issues
  • Authors/reviewers
    • Instructions for authors
    • Submit a manuscript
    • Open access
    • COVID-19 submission information
    • Peer reviewer login
  • Alerts
  • Podcasts
  • 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
  • ERJ Early View
  • Past issues
  • Authors/reviewers
    • Instructions for authors
    • Submit a manuscript
    • Open access
    • COVID-19 submission information
    • Peer reviewer login
  • Alerts
  • Podcasts
  • Subscriptions

How does a new breathlessness support service affect patients?

Marjolein Gysels, Charles C. Reilly, Caroline J. Jolley, Caty Pannell, Femke Spoorendonk, Helene Bellas, Preety Madan, John Moxham, Irene J. Higginson, Claudia Bausewein
European Respiratory Journal 2015 46: 1515-1518; DOI: 10.1183/13993003.00751-2015
Marjolein Gysels
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
2Centre for Social Science and Global Health, University of Amsterdam, Amsterdam, The Netherlands
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • For correspondence: mhgysels@gmail.com
Charles C. Reilly
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
3Physiotherapy, King's College Hospital NHS Foundation Trust, London, UK
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Caroline J. Jolley
4King's College London, Dept of Asthma, Allergy and Respiratory Science, London, UK
5Respiratory Medicine, King's College Hospital NHS Foundation Trust, London, UK
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Caty Pannell
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Femke Spoorendonk
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Helene Bellas
3Physiotherapy, King's College Hospital NHS Foundation Trust, London, UK
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Preety Madan
6Occupational Therapy, King's College Hospital NHS Foundation Trust, London, UK
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
John Moxham
4King's College London, Dept of Asthma, Allergy and Respiratory Science, London, UK
5Respiratory Medicine, King's College Hospital NHS Foundation Trust, London, UK
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Irene J. Higginson
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
Claudia Bausewein
1King's College London, Cicely Saunders Institute, Dept of Palliative Care, Policy and Rehabilitation, London, UK
7Dept of Palliative Medicine, University Hospital Munich, Munich, Germany
  • Find this author on Google Scholar
  • Find this author on PubMed
  • Search for this author on this site
  • Article
  • Figures & Data
  • Info & Metrics
  • PDF
Loading

Abstract

New breathlessness support service helps patients with person-centred, individualised care, boosting confidence http://ow.ly/RMIYo

To the Editor:

Breathlessness is a highly prevalent and distressing symptom in advanced disease but there is uncertainty about its treatment. Patients with breathlessness have complex needs, on average experience 13–14 other symptoms (such as pain, fatigue, sleep problems and depression) and frequently attend emergency hospital services [1]. As the best way of organising and delivering a service for the relief of breathlessness is not known, an interdisciplinary service was developed for patients with breathlessness in advanced disease and their carers: the Breathlessness Support Service (BSS) [2]. Here, we report the results of qualitative interviews of patients who received the BSS.

The BSS is distinct from previous services [3, 4] with respect to the incorporation of respiratory expertise, the widening of the range of professionals in the team and its primary mode of delivery in the outpatient clinic, with two appointments and a home visit within 4 weeks. At the first clinic visit, patients were assessed by respiratory medicine and palliative care clinicians and an individualised plan of treatment was agreed. They received a breathlessness pack with information, management and pacing guidance, a poem (to help breathing and relaxation during crises), a hand-held fan or water spray and an individualised crisis plan. A home assessment after 2–3 weeks was performed by a respiratory physiotherapist and/or occupational therapist, who developed a tailored programme based on the domestic situation of the patient. If needed, they referred the patient to rehabilitation or a social worker. After the second and final clinic visit, further individualised actions and a discharge plan were agreed. Summaries of both clinic visits were sent to the individual, with a copy to their general practitioner and referring staff [2, 5].

The BSS was evaluated by a randomised controlled trial (RCT) [5], according to the Medical Research Council Framework for complex interventions. The BSS significantly improved self-rated quality of life and the way patients managed their breathlessness, as assessed by breathlessness mastery. Patients recorded their mastery, and its effects on quality of life and function. Patients also had better survival, as a secondary outcome [6, 7]. The qualitative findings of the mixed-methods evaluation shed light on the components of the BSS, its mechanisms and how patients experienced the intervention.

The outpatient clinic of the BSS was based in the Cicely Saunders Institute at King's College Hospital in Southeast London, UK. 105 patients consented and were randomised for the trial [5]. Ethics approval was granted by the King's College Hospital Research Ethics Committee (reference 10/H0808/17). The study met the requirement of the local Research Governance Framework. All patients provided informed consent.

A researcher conducted interviews with a subsample of patients, 12 weeks after initially receiving the BSS. All interviews took place at the patients' homes, except one in a nursing home. The interviews were semi-structured and in-depth. A topic guide was used to ensure that all relevant topics were systematically covered (table 1). Interviews were tape-recorded and transcribed verbatim. Demographic data and clinical information were collected in the context of the RCT. Analysis was performed first by reading and coding the transcribed interviews. From the data, themes/categories were derived through an inductive approach. These categories and their properties were constantly tested against newly emerging categories (constant comparison), thereby questioning and confirming them in the light of emerging findings and relating them to each other so that they became relevant on a more general level [8].

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

Qualitative study topic guide

A total of 20 interviews were conducted. 10 patients had chronic obstructive pulmonary disease, six had interstitial lung disease (ILD) and four had cancer. 11 were men and nine were women, and the median age was 72 years (range 40–84 years).

The BSS included the provision of a hand-held fan, based on evidence of the effect of cool air on the face, which stimulates cold receptors situated in the upper airway [9, 10]. Patients said that they found the fan helpful: it was portable and fitted in a handbag and they carried it everywhere they went. It gave them a feeling of safety to have the fan at hand when they went out and if they started to feel breathless they could use it to help master their breathlessness. Severe episodes of breathlessness can escalate very quickly, often within seconds [11]. A treatment that provides a rapid response, such as the fan, may be valuable.

The physiotherapeutic support was included in the intervention as breathing training is a fundamental element of breathlessness management. The poem provided a strategy to support patients in managing an acute panic episode. The occupational advice and information pack were included based on evidence of the importance of providing education to patients and carers and of addressing issues that need adjustment in relation to daily activity and lifestyle [12]. Most of the participants found this support from the occupational therapist and physiotherapist helpful. They said it reinforced the positions they had learned and it made them more confident. They added the recommended adaptations to their routines and integrated the items into their home interior. For example, they stuck the poem on the fridge door or had the laminated sheet with breathing instructions at hand to remind them how to practise relaxation.

Yes the […] breathlessness hasn't improved […] but I deal with it better now than I did before so.

Interviewer: What do you mean “deal with it”?

[…] well, learning to relax and not get so stressed out, I mean I still get the old panic now and again when I've really put myself out […], but most of the time I deal with it quite easily. […] That poem has helped me the most, because it's something that I can […] do anywhere. If I'm sitting on the train I can do it and […] that's been the biggest help definitely.

… giving you tips on how to do things [physiotherapist and occupational therapist visit], you know sort of little things like when you're using the vacuum cleaner, to breathe out when you push it out. Little things like that, you don't think of. Um, there were quite a few things and they're logged in the memory bank, but I remember them as I do them it's become automatic now.

Patient with cancer

Concerning the format of the intervention, patients expressed preferences regarding the place, timing and approach of the intervention. Most patients (n=16) were happy to come to the BSS. Nine people had a preference for a clinic visit. Due to the disability caused by breathlessness, they rarely went out, didn't socialise and a clinic was an excuse to speak with someone. Related to this need for social contact was the suggestion to organise group sessions. Patients suggested ideally regular and ongoing contact with the service. The welcoming and person-centred approach of the service was very much appreciated.

… They both stood up, shook your hand and said “Hello nice to meet you”, you know? […] How many doctors do you know that […], say “Take a seat” […] People don't even look at you…

Patient with cancer

Patients valued the integrated approach of the BSS. They said it was a new experience for them that their breathing problems were treated holistically, with attention to other symptoms and physical health.

I was a bit surprised that they went outside the particular problem […] They talked about my general health and that sort of thing… I suppose it's interconnected. You can't have it in isolation.

Patient with ILD

These findings provide important evidence regarding how the specialist service was received by patients. This enhanced our understanding beyond the specific items and knowledge, to the mechanisms and the format of the BSS. It was the integrated approach and expertise of palliative care, respiratory medicine, occupational therapy and physiotherapy that was beneficial and that provided patients with a sense of mastery that improved their quality of life. This was achieved through a person-centred approach, directed at patients' specific concerns and tailored to the particular environments in which patients and carers experience this complex symptom.

Acknowledgements

We thank all the patients who participated in this research. We also thank everyone who referred patients to this study, especially the Palliative Care, Respiratory Medicine and Physiotherapy Depts at King's College Hospital, London, UK, and the Community Palliative Care teams across Guy's and St Thomas’ Hospitals, London. Thanks to Julie Fuller (Respiratory Medicine, King's College London) and Joanna Davies (Cicely Saunders Institute, King's College London) for providing administrative support during this project.

Footnotes

  • Support statement: This article presents independent research funded by the Department of Health, National Institute for Health Research (NIHR), under its Research for Patient Benefit Programme (grant reference number PB-PG-PB-PG-0808-17311). The views expressed are those of the authors and not necessarily those of the National Health Service, the NIHR or the Department of Health. Additional funding was also provided by Cicely Saunders International. The funders had no role in the design and conduct of the study, collection, management, analysis, and interpretation of the data; preparation, review or approval of the manuscript; or the decision to submit the manuscript for publication. Funding information for this article has been deposited with FundRef.

  • Conflict of interest: Disclosures can be found alongside the online version of this article at erj.ersjournals.com

  • Received February 27, 2015.
  • Accepted July 31, 2015.
  • Copyright ©ERS 2015

References

  1. ↵
    1. Bausewein C,
    2. Booth S,
    3. Gysels M, et al.
    Understanding breathlessness: cross-sectional comparison of symptom burden and palliative care needs in chronic obstructive pulmonary disease and cancer. J Palliat Med 2010; 13: 1109–1118.
    OpenUrlCrossRefPubMedWeb of Science
  2. ↵
    1. Bausewein C,
    2. Jolley C,
    3. Reilly C, et al.
    Development, effectiveness and cost-effectiveness of a new out-patient Breathlessness Support Service: study protocol of a phase III fast-track randomised controlled trial. BMC Pulm Med 2012; 12: 58.
    OpenUrlCrossRefPubMed
  3. ↵
    1. Bredin M,
    2. Corner J,
    3. Krishnasamy M, et al.
    Multicentre randomised controlled trial of nursing intervention for breathlessness in patients with lung cancer. BMJ 1999; 318: 901–904.
    OpenUrlAbstract/FREE Full Text
  4. ↵
    1. Farquhar MC,
    2. Prevost AT,
    3. McCrone P, et al.
    Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial. BMC Med 2014; 12: 194.
    OpenUrlCrossRefPubMed
  5. ↵
    1. Higginson IJ,
    2. Bausewein C,
    3. Reilly CC, et al.
    An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med 2014; 2: 979–987.
    OpenUrlCrossRefPubMed
  6. ↵
    1. Campbell M,
    2. Fitzpatrick R,
    3. Haines A, et al.
    Framework for design and evaluation of complex interventions to improve health. BMJ 2000; 321: 694–696.
    OpenUrlFREE Full Text
  7. ↵
    Medical Research Council. A framework for development and evaluation of RCTs for complex interventions to improve health. London, Medical Research Council, 2000.
  8. ↵
    1. Strauss A,
    2. Corbin J
    . Basics of Qualitative Research: Grounded Theory Procedures and Techniques. 2nd Edn. Newbury Park, Sage Publications Inc., 1990.
  9. ↵
    1. Galbraith S,
    2. Fagan P,
    3. Perkins P, et al.
    Does the use of a handheld fan improve chronic dyspnea? A randomized, controlled, crossover trial. J Pain Symptom Manage 2010; 39: 831–838.
    OpenUrlCrossRefPubMedWeb of Science
  10. ↵
    1. Schwartzstein RM,
    2. Lahive K,
    3. Pope A, et al.
    Cold facial stimulation reduces breathlessness induced in normal subjects. Am Rev Respir Dis 1987; 136: 58–61.
    OpenUrlCrossRefPubMedWeb of Science
  11. ↵
    1. Simon ST,
    2. Higginson IJ,
    3. Benalia H, et al.
    Episodic and continuous breathlessness: a new categorization of breathlessness. J Pain Symptom Manage 2013; 45: 1019–1029.
    OpenUrlCrossRefPubMedWeb of Science
  12. ↵
    1. Davis CL,
    2. Penn K,
    3. A'Hern R, et al.
    Single dose randomized controlled trial of nebulized morphine in patients with cancer related breathlessness. Palliat Med 1996; 10: 64–65.
    OpenUrl
View Abstract
PreviousNext
Back to top
View this article with LENS
Vol 46 Issue 5 Table of Contents
European Respiratory Journal: 46 (5)
  • Table of Contents
  • Table of Contents (PDF)
  • About the Cover
  • 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.
How does a new breathlessness support service affect patients?
(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
How does a new breathlessness support service affect patients?
Marjolein Gysels, Charles C. Reilly, Caroline J. Jolley, Caty Pannell, Femke Spoorendonk, Helene Bellas, Preety Madan, John Moxham, Irene J. Higginson, Claudia Bausewein
European Respiratory Journal Nov 2015, 46 (5) 1515-1518; DOI: 10.1183/13993003.00751-2015

Citation Manager Formats

  • BibTeX
  • Bookends
  • EasyBib
  • EndNote (tagged)
  • EndNote 8 (xml)
  • Medlars
  • Mendeley
  • Papers
  • RefWorks Tagged
  • Ref Manager
  • RIS
  • Zotero

Share
How does a new breathlessness support service affect patients?
Marjolein Gysels, Charles C. Reilly, Caroline J. Jolley, Caty Pannell, Femke Spoorendonk, Helene Bellas, Preety Madan, John Moxham, Irene J. Higginson, Claudia Bausewein
European Respiratory Journal Nov 2015, 46 (5) 1515-1518; DOI: 10.1183/13993003.00751-2015
del.icio.us logo Digg logo Reddit logo Technorati logo Twitter logo CiteULike logo Connotea logo Facebook logo Google logo Mendeley logo
Full Text (PDF)

Jump To

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

Subjects

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

More in this TOC Section

Agora

  • D-dimer cut-offs and machine learning for ruling out pulmonary embolism
  • Sputum cell counts in COPD patients who use electronic cigarettes
  • Extracorporeal life support allows lung transplant in rapidly progressive ILD
Show more Agora

Research letters

  • D-dimer cut-offs and machine learning for ruling out pulmonary embolism
  • Sputum cell counts in COPD patients who use electronic cigarettes
  • Extracorporeal life support allows lung transplant in rapidly progressive ILD
Show more Research letters

Related Articles

Navigate

  • Home
  • Current issue
  • Archive

About the ERJ

  • Journal information
  • Editorial board
  • Reviewers
  • 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
  • Podcasts
  • 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

Print ISSN:  0903-1936
Online ISSN: 1399-3003

Copyright © 2022 by the European Respiratory Society