Article Text

Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experience-based codesign
  1. Lisa Jane Brighton1,2,
  2. Nannette Spain3,
  3. Jose Gonzalez-Nieto3,
  4. Karen A Ingram4,
  5. Jennifer Harvey4,
  6. William D-C Man4,5,6,7 and
  7. Claire M Nolan5,8
  1. 1Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK
  2. 2Department of Psychology, King's College London, London, UK
  3. 3CREATE-ILD Patient and Public Involvement Group, Guy's and St Thomas' NHS Foundation Trust, London, UK
  4. 4Harefield Pulmonary Rehabilitation Unit, Guy's and St Thomas' Hospitals NHS Trust, London, UK
  5. 5Harefield Respiratory Research Group, Guy's and St Thomas' Hospitals NHS Trust, London, UK
  6. 6National Heart and Lung Institute, Imperial College London, London, UK
  7. 7Faculty of Life Sciences and Medicine, King’s College London, London, UK
  8. 8College of Health, Medicine and Life Sciences, Department of Health Sciences, Brunel University London, London, UK
  1. Correspondence to Dr Claire M Nolan; claire.nolan{at}brunel.ac.uk

Abstract

Background Remote delivery may improve access to pulmonary rehabilitation (PR). Existing studies are largely limited to individuals with COPD, and the interventions have lacked codesign elements to reflect the needs and experiences of people with chronic respiratory disease, their carers/families and healthcare professionals. The aim of this study was, using experience-based codesign (EBCD), to collaborate with people with interstitial lung disease (ILD), their carers/families and healthcare professionals, to codesign a remote PR programme ready for testing in a future study.

Methods EBCD comprises interviews, stakeholder workshops and codesign meetings. One-to-one videorecorded interviews with purposively selected people with ILD with experience of PR, their carers/families and healthcare professionals, were edited into a 20 min film. The film was shown at three audiorecorded stakeholder feedback events to identify key themes and touchpoints, and short-list key programme components. The programme was finalised at two further codesign workshops.

Results Ten people with ILD, four carers/families and seven healthcare professionals were interviewed. Participants in the codesign workshops included service-user group: n=14 and healthcare professional group: n=11; joint event: n=21. Final refinements were made with small codesign teams, one comprising three people with ILD and one carer/family member, one with five healthcare professionals. The final codesigned model is a group based, supervised programme delivered by videoconference. Key elements of programme specific to ILD include recommendations to ensure participant safety in the context of desaturation risk, dedicated time for peer support and adaption of the education programme for ILD needs, including signposting to palliative care.

Conclusion In this EBCD project, a remote PR programme for people with ILD was codesigned by service-users, their carers/families and multidisciplinary healthcare professionals. Future research should explore the feasibility and acceptability of this intervention.

  • Interstitial Fibrosis
  • Pulmonary Rehabilitation

Data availability statement

Data are available on reasonable request.

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Data availability statement

Data are available on reasonable request.

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Footnotes

  • Contributors Concept and design of study: LJB, WD-CM and CMN; acquisition of data: KAI, JH, LJB and CMN; analysis of data: NS, JG-N, LJB and CMN; drafting of manuscript: all authors; revision of manuscript critically for important intellectual content: all authors; approval of final manuscript: all authors; guarantor: CMN.

  • Funding This study was funded by a Royal Brompton and Harefield Charity Research Management Fund.

  • Disclaimer The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, NIHR or the Department of Health and Social Care.

  • Competing interests NS, JG-N, KAI and JH report no competing interests. LJB was funded by an ESRC Post-doctoral fellowship ES/X005259/1 and was supported by the NIHR Applied Research Collaboration South London (NIHR ARC South London) at King’s College Hospital NHS Foundation Trust. CMN reports funding from the Royal Brompton and Harefield Charity, National Institute for Health Research for Patient Benefit and Brunel University London BRIEF award. WD-CM reports grants from National Institute for Health Research, grants from British Lung Foundation, outside the submitted work.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.