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Interstitial Lung Disease Fatigue & Breathlessness (ILD-FAB) Programme: A multidisciplinary feasibility study

Mandizha, J.; Davies, R.; Crook, C.; Duckworth, A.; Gibbons, M. A.; Lanario, J. W.; Lines, S.; Moss, J.; Taylor, K.; Russell, A.-M.

2025-06-12 respiratory medicine
10.1101/2025.06.10.25329329 medRxiv
Show abstract

BackgroundFatigue, breathlessness and cough are prevalent symptoms of Interstitial Lung Disease (ILD) adversely impacting quality-of-life and contributing to psychological distress. The Fatigue and Breathlessness (FAB) programme facilitates supported self-management for people living with life-limiting conditions such as cancer. We explore its utility when adapted for people living with ILD. MethodsThe 4-week ILD-FAB programme offers each group of up to 6 participants weekly two-hour sessions led by an ILD-specialist Physiotherapist and Clinical Nurse Specialist (CNS). Primary focus is on strategies to manage breathlessness, fatigue and wellbeing. Further, a 1:1 session with the ILD-CNS enables participants to set personalised goals and explore individual health beliefs/behaviours using a Cognitive Behavioural Therapy (CBT) assessment framework. The self-reporting Chronic Respiratory Questionnaire (CRQ-SR) evaluates breathlessness, fatigue, emotional function and mastery at baseline and after 4 weeks. We facilitated eleven groups between March 2023 and December 2024. ResultsForty-nine participants (26 male; median age 76 years [IQR=14]) were diagnosed with Idiopathic Pulmonary Fibrosis/IPF (n=21), Progressive Pulmonary Fibrosis/PPF (n=17) or non-progressive ILD (n=11) of various aetiologies. Lung function indicated a range of disease severity (FVC % predicted median: 70% [IQR=34]) Thirty-seven (76%) participants attended all four sessions, 6 (12%) attended three sessions, 2 (4%) attended two sessions and 4 (8%) attended one session. Thirty-seven patients, all who attended at least 3 sessions, completed the CRQ-SR at baseline and Week 4. Fifty-nine percent of respondents (n=22) demonstrated clinically significant improvements in dyspnoea scores, 51% (n=19) in emotional functioning scores and 49% (n=18) in fatigue and mastery scores. Thirty-five respondents (95%) demonstrated a clinically significant improvement in at least one domain. All participants (100%) would recommend this programme to others. ConclusionThese data demonstrate feasibility, acceptability and clinical effectiveness of an ILD-specific FAB programme. Further research will explore a range of outcome measures longitudinally in a larger cohort. Key MessagesO_LIWhat is already known on this topic -The FAB programme is delivered in hospices and NHS trusts UK-wide to improve confidence in fatigue and breathlessness management and reduce anxiety for people living with life-limiting illnesses such as cancer. Formal evaluations are positive but limited by small sample sizes and the use of non-validated outcome measures. C_LIO_LIWhat this study adds -Our FAB programme, adapted for people with ILD, is feasible, acceptable and clinically effective. C_LIO_LIHow this study might affect research, practice or policy - The FAB programme offers one multimodal approach to improving self-management in people with ILD. Further research in a larger, more heterogeneous patient population will optimise outcome measures, broaden acceptability and determine cost-effectiveness. C_LI

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