Discussion
We codesigned a remote PR programme for ILD with service users and multidisciplinary healthcare professionals. Key elements of the remote programme specific to ILD include recommendations to ensure participant safety in the context of the risk of exercise-induced oxygen desaturation, dedicated time for peer support and adaption of the education programme for ILD, with specific recommendations for palliative care.
Given the risk of exercise-induced oxygen desaturation and the rapid disease trajectory for select individuals with ILD, participants highlighted the importance of proactive measures to ensure participant safety. For example, it was recommended that peripheral oxygen monitors should be worn when exercising and oxygen saturations recorded regularly throughout the exercise session, in addition to the development of protocols to manage unwell patients and emergency situations. Only two small RCTs (n=21 fibrotic ILD,9 n=29 IPF10) which involved remote monitoring systems recorded peripheral oxygen saturation during exercise but did not report the results nor adverse event data, which limits interpretation of the safety of remote programmes in ILD.
Similar to previous qualitative research,20 the importance of the social aspect of the programme was emphasised by people with ILD, in particular having an opportunity to access peer support. It is noteworthy that previous studies of remote programmes in ILD did not include this in the intervention,8–15 therefore, its impact has not been investigated. For people with ILD, peer support provides a way to connect with other people with the same disease and is an enabler of exercise.20 While valuing peer support is common across respiratory conditions, this aspect might be particularly important for people with ILD given that the condition is less common and opportunities to meet people with similar experiences may be infrequent. Dedicated time for this was, therefore, included in the final programme.
As reported in previous research on traditional in-person PR programmes,18 19 participants highlighted the importance of adapting the education programme for ILD, with consideration of variation in literacy, including, for example, disease pathophysiology and progression, medical management and oxygen therapy. The importance of education about palliative care was recognised by all participants, and aligns with calls to integrate this approach into routine ILD care. While palliative care needs are common across respiratory illnesses, the shorter average life expectancy for select individuals postdiagnosis (compared with, eg, COPD) may make introductions to palliative care particularly relevant. However, it was agreed that PR may not be the most appropriate setting for this sensitive topic and that interested individuals could be sign-posted to specialist services for further information and/or care. While previous studies on remote PR programmes in ILD included education,9 10 13–15 only 1 trial involving 29 participants10 provided IPF-specific content. This trial did not address palliative care needs nor evaluate this aspect of the programme.
Other important elements of the programme highlighted by participants were the programme structure and recommendations for the exercise component. Regarding structure, participants emphasised the importance of a supervised, ‘live’ programme underpinned by evidence-based practice. Therefore, the final programme involved an in-person assessment and videoconference PR delivered in line with PR guidelines.2 16 28 This is contrast to previous research of remote PR programmes in ILD where the exercise component was predominantly unsupervised8 9 11–15 or supervised using a virtual physiotherapist10 and delivered on a telerehabilitation platform,9–12 Wii Fit8 or at home.10 13–15
Regarding the exercise component, participants recommended allocating service-users with similar levels of functional ability to the same group, the use of simple exercise equipment available in the home (eg, chair) supplemented with free weights or elastic bands provided by the PR service, the prescription of high-intensity interval aerobic training, and an unsupervised session involving continuous aerobic exercise. These exercise recommendations have not been explored in previous studies of remote PR programmes in ILD, therefore, their feasibility, acceptability and efficacy should be investigated.
Strengths and limitations
Our sample included people with diverse ethnicities, levels of socioeconomic deprivation, ILD diagnoses, disease stage and supplemental oxygen prescription, as well as diverse professional roles, increasing the transferability of our findings. Similarly, we supported participants who were unable to use the Internet to attend the online meetings, which is important as 31% of PR service-users have never accessed the Internet.29 We also included participants with experiences of a variety of models of PR, and accommodated the flexible involvement of participants at each stage of the EBCD process due to difficulties will illness and/or other commitments. Including service-user and professional stakeholders in the codesign process ensured that a range of preferences and concerns were explored that may not have been comprehensively captured by one group. For example, it was service-users that particularly championed the importance of socialisation, while the difficulties with exercise prescription were only raised by professionals.
Despite these strengths, experiences may particularly reflect those of people based in London and the South-East of the UK, and more work is required to understand the needs of people with ILD who are unable to communicate in English and who are housebound. In addition, we excluded people who did not have any experience of PR, which may bias our results. The design of the programme was also constrained in some ways by the accepted PR definition,2 16 28 as participants agreed this would be important for reimbursement of services. However, the EBCD approach enabled participants to prioritise the content and delivery most suited to people with ILD, and emphasise the importance of the ‘beyond rehabilitation’ stage of the intervention. Using a codesign approach may also result in an intervention that is more likely to be feasible and acceptable, supporting translation from the research to clinical setting.