CREATE-ILD
Research type
Research Study
Full title
Co-design of a REmote pulmonAry rehabilitaTion programmE for Interstitial Lung Disease
IRAS ID
299711
Contact name
Claire Nolan
Contact email
Sponsor organisation
Guy's and St Thomas' NHS Foundation Trust
Duration of Study in the UK
0 years, 11 months, 31 days
Research summary
Interstitial Lung Disease (ILD) is a scarring lung disease, characterised by breathlessness. A lung exercise and education programme (pulmonary rehabilitation) can improve fitness, breathlessness and quality of life in people with ILD. However, problems with programme access and uptake exist.
In other lung diseases, research has shown that pulmonary rehabilitation delivered remotely e.g. at home can be beneficial. However, this progamme format has not been explored in people with ILD.
The aim of this study is to develop a remote pulmonary rehabilitation programme for people with ILD, using a method called experience-based co-design.
During the study, we will video interview people with ILD, carers/family and pulmonary rehabilitation staff to understand what they think remote pulmonary rehabilitation for people with ILD should involve. A short video of these interviews will be shared at three feedback meetings: one with pulmonary rehabilitation staff, one with people with ILD and carers/family and one with staff and people with ILD and carers/family. These meetings will help to co-design the remote pulmonary rehabilitation programme. The research team and patient representative will use the information from the interviews and feedback meetings to finalise the programme and share it at celebration event for all the people that took part in the interviews and feedback meetings. The programme will then be ready to be tested in a research study.
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
21/NE/0135
Date of REC Opinion
15 Jul 2021
REC opinion
Favourable Opinion