Althobiani, Malik Abdulmalik; (2024) Home Monitoring in Interstitial Lung Disease. Doctoral thesis (Ph.D), UCL (University College London).

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Abstract

Introduction: Interstitial lung disease (ILD) comprises a variety of conditions affecting the parenchyma of the lung, with a diverse incidence. Some patients are prone to rapid progression, while others are susceptible to exacerbations. Forced vital capacity (FVC) is used as an endpoint in clinical trials for novel idiopathic pulmonary fibrosis (IPF) therapies. However, it is often measured every three months, resulting in lengthy monitoring periods to identify meaningful treatment responses or disease trajectories. Home spirometry may enable more regular monitoring, potentially allowing for faster detection of ineffective treatment and reductions in clinical trial size, duration, and cost. Individuals with ILD often experience cough, shortness of breath, anxiety, exercise limitation, and fatigue, impacting their quality-of-life (QoL). Conventional indicators of disease progression, such as pulmonary function tests (PFT), may not completely capture the severity of symptoms experienced by patients. Continuous remote patient monitoring involving more than FVC may provide a more complete and real-time assessment of physiological parameters and symptoms. However, the views of clinicians and patients are poorly understood, as is the feasibility and utility of delivering such an approach. Aim: To systematically gather, summarise and evaluate the evidence from clinical trials for feasibility, reliability, and detection of exacerbations and/or disease progression in patients with ILD. To understand the views of clinicians and patients about home monitoring in patients with ILD. To investigate the feasibility and utility of a contemporary approach to patient care using commercially available technology to detect disease progression in patients with ILD through continuous monitoring of physiological parameters and symptoms. Methods: A systematic review was conducted assessing studies on home monitoring of physiological parameters and symptoms to detect ILD exacerbations and progression. This was followed by an international survey of clinicians to explore their perspectives on using telehealth for remote ILD health care support. A patient survey was then conducted to quantify patients’ use of and experiences with digital devices. These preliminary studies informed the development of the research question and main PhD hypotheses. To test these hypothesis, two subsequent studies were conducted. Firstly, a feasibility study that assessed the feasibility, acceptability, and value of remote monitoring using commercially available technologies over 6 months period. Secondly, a prospective observational cohort study that evaluated a real-time multimodal program using commercially available technology to detect disease progression in patients with ILD through continuous monitoring of physiological parameters and symptoms. Results: The systematic review provided supportive evidence for the feasibility and acceptability of home monitoring in patients with ILD and identified priorities for future research. The findings of the follow-up studies indicated that although health care professionals recognised the potential benefits of home monitoring, their adoption rate was low due to barriers like lack of organisational support, technical issues, and workload constraints. Although the findings of the mixed-methods study have demonstrated that digital devices are widely used among patients with ILD, the views and perspectives regarding the use of these devices is varied. The prospective multicentre observational cohort study provided evidence supporting the feasibility and acceptability of remote monitoring to capture both subjective and objective data from varied sources in patients with respiratory diseases. The high engagement level observed from the passively collected data suggests the potential value of wearables for long-term, user-friendly remote monitoring in chronic respiratory disease management. The main study is one of the first to employ a comprehensive multimodal remote monitoring system to investigate the potential of home-monitoring to detect progression in patients with ILD. The results demonstrate the potential of multimodal home-monitoring to assess associations between physiological parameters and symptoms with disease progression, and to detect disease progression in patients with ILD. Moreover, the results suggest a strong correlation between hospital and home measurements of forced vital capacity in patients with ILD. Conclusion: Taken collectively, the findings presented in this thesis supports the use of a multimodal home-monitoring system, and the potential role for physiological parameters and symptoms to detect ILD progression. It provides a contemporary, personalised approach to patient management. These results provide a critical initial step towards further evaluating the value of home-monitoring for ILD management. However, larger, longitudinal validation studies are required. Future research could explore the potential of machine learning algorithms on this data for real-time detection of ILD disease progression. Machine learning models could provide early detection of changes in lung function and alert patients and healthcare providers to acute and chronic changes and empower patients to better self-manage their disease. This could allow for timely interventions and more personalised management of ILD.

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