Update from the Irish Lung Fibrosis Association

AUTHOR: Nicola Cassidy, Director of the Irish Lung Fibrosis Association

The Irish Lung Fibrosis Association (ILFA) provides research, education, and support for idiopathic pulmonary fibrosis (IPF). IPF is a progressive, debilitating lung condition that mostly affects older adults and leads to irreversible architectural lung damage, impairment of gas exchange, and respiratory failure.

It is vital that patients with pulmonary fibrosis engage in regular exercise to maintain their strength, muscle mass, physical and mental wellbeing, and independence. ILFA provides tailored exercise resources, including the 2,000 Steps Challenge walking pack, exercise DVD, yoga DVD, and TheraBands free-ofcharge to patients and respiratory healthcare professionals to promote exercise for pulmonary fibrosis patients

Meeting patients’ unmet exercise needs during the pandemic Pulmonary fibrosis was designated as an ‘extremely medically vulnerable’ condition for Covid-19 in 2020. Pulmonary fibrosis patients were advised to cocoon, follow public health guidelines, and take extra precautions to protect their health.

In April 2020, ILFA conducted a survey of our members (111 patients responded) to understand the impact of Covid-19. Almost half (47 per cent) said they were exercising less since Covid measures began, 42 per cent reported being worried, and 32 per cent stated they were anxious. The lack of exercise and negative feelings had the potential to impact patients’ health and wellbeing.

ILFA recognised that many patients were self-isolating, afraid to leave their homes, and fearful of undertaking exercise independently. To prevent deconditioning in this vulnerable cohort and keep patients engaged and committed to exercise, ILFA collaborated with University Hospital Limerick to deliver a virtual exercise programme. Physiotherapistled weekly online exercise classes commenced in May 2020 using the Zoom platform and were advertised to ILFA members via the newsletter, website, and social media. Participants self-selected to register for the class and were provided with safety advice and information in advance. Classes are organised and supervised by an ILFA staff member.

The classes grew in popularity and in late 2020 an extra weekly class was scheduled due to demand. ILFA continues to deliver physiotherapist-led online classes twice a week and patients are referred by doctors, nurses, and physiotherapists working in hospital, community, and hospice settings.

Patient survey

In May 2021, participants taking part in classes were invited to complete an anonymous online survey to assess the impact of the virtual exercise classes.

A total of 53 participants with IPF responded to the survey. The majority (83 per cent) were aged over 60 years of age, 51 per cent were male, 36 per cent used oxygen all the time or most of the time, and 6 per cent were lung transplant recipients. Just 12 per cent of participants were diagnosed with IPF in the last year, 22 per cent between one-to-two years ago, 26 per cent between two-to-three years ago, and 24 per cent between three-to-five years ago; with 60 per cent of participants living outside Dublin.

At the time of the survey, just 11 per cent of participants were on a hospital waiting list for either face-to-face or virtual pulmonary rehabilitation. Only 34 per cent of respondents had previously attended a face-to-face pulmonary rehabilitation course and, of these, 39 per cent continued to exercise regularly when the course had finished. When attending hospital courses, 89 per cent travelled by car and the average distance travelled was 8km for Dublin residents and 19km among those living outside Dublin (one person travelled over 50km to access classes).

A rating of ‘excellent’ was awarded for the classes by 73 per cent of respondents for help in overcoming anxiety about exercising online. The majority (80 per cent) stated that the instructions were excellent, and 77 per cent found it easy to join the class using Zoom.

Almost two-thirds (64 per cent) reported being more active because of the online exercise classes and 68 per cent reported being less fearful about doing exercise since starting the online classes. Overall, 83 per cent of patients who were previously not at all or not very active reported that they are now more active. Online exercise classes are safe and feasible for IPF patients and have provided substantial physical and emotional benefits. The survey highlights the lack of pulmonary rehabilitation availability to pulmonary fibrosis patients.

Acknowledgments

ILFA is grateful to Niamh Julian, Gordon Cagney, Petra Grehan, and Eimear Bell, respiratory physiotherapists, for their work and commitment to delivering the exercise classes. 

References

1. Cassidy N, Sheahan D, Fox L, Brown L, Galvin L, Cassidy E, Sheridan M, O’Reilly KM. Perspectives of interstitial lung disease patients and carers during Covid-19. Irish Medical Journal, 114 (7):410

2. Abstracts from the Irish Thoracic Society Annual Scientific Meeting 2021. Ir J Med Sci 190, 159–211 (2021). doi: 10.1007/s11845021-02845-3