The Breath project (Project Number: 2022-1-PL01-KA220-HED-000089283) has been Co-funded by the European Union. Views and opinions expressed are however those of the author or authors only and do not necessarily reflect those of the European Union or the Foundation for the Development of the Education System. Neither the European Union nor the entity providing the grant can be held responsible for them.

Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experience-based codesign

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Institution
Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK
Institution Typology
University, Hospital, Rehabilitation Center, Public Institution
Country
United
Description
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.



Disease
Interstitial lung disease
Activity level
Medium
Activity Typology
Rehabilitation section-based activities, Home-based activities
Motivation Tools
Not available
Innovation
These practices reflect a comprehensive approach to enhancing quality of life and disease management for ILD through adaptive and accessible PR programmes, aligned with current best practices in pulmonary rehabilitation.





Evaluation System
- Participants were classified as MRC ≤3 or ≥4, indicating different levels of breathlessness.


- Forced Vital Capacity (FVC): Measured in litres (L) and as a percentage of predicted, used to evaluate lung function.


- Diffusing Capacity of the Lung for Carbon Monoxide (DLCO): Assesses the efficiency of the lungs in transferring carbon monoxide from the lungs to the bloodstream, measured in mmol/min/kPa and as a percentage of predicted.
Assessment
- Inclusive and diverse participation: Both service-users and healthcare professionals were included in the codesign process, ensuring a broad representation of perspectives and experiences related to interstitial lung disease (ILD).


- Customisation of rehabilitation programmes: The importance of tailoring pulmonary rehabilitation (PR) programmes to the individual needs of ILD patients was recognised, including pre-course assessments for risk evaluation and adaptation of goals and exercise programmes.


- Access and technology: Emphasis was placed on ensuring equitable access to remote PR programmes, providing technology training where necessary, and conducting home visits for users unable to use the internet.


- Programme format and delivery: The use of video conferencing was recommended to supervise and facilitate group PR programmes, ensuring a social and supportive atmosphere among participants.


- Educational component: The significance of ongoing education on symptom management, oxygen therapy, palliative care, and disease progression was underscored, adapting educational materials to varying literacy levels and offering live support via video conferencing.


Continued support: Participants expressed a need for maintenance programmes post-structured rehabilitation to promote self-management and continuity of supervised exercise.





References
Brighton LJ, Spain N, Gonzalez-Nieto J, et al. Remote pulmonary rehabilitation for interstitial lung disease: developing the model using experiencebased codesign. BMJ Open Respir Res 2024;11:e002061. doi:10.1136/ bmjresp-2023-002061
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