Malik A. Althobiani, Rebecca Shuttleworth, John Conway, Jonathan Dainton, Anna Duckworth, Ana Jorge Da Ponte, Jessica Mandizha, Joseph W. Lanario,Michael A. Gibbons, Sarah Lines, Chris J. Scotton, John R. Hurst, Joanna C. Porter, Anne-Marie Russell
Abstract
Patients diagnosed with Interstitial Lung Diseases (ILD) use devices to self-monitor their health and well-being. Little is known about the range of devices, selection, frequency and terms of use and overall utility. We sought to quantify patients’ usage and experiences with home digital devices, and further evaluate their perceived utility and barriers to adaptation.
Introduction
Interstitial Lung Diseases (ILDs) are associated with a symptom burden affecting daily life that is often complex to manage [1]. ILDs may present as multi-system disorders often alongside significant co- morbidities [2,3]. Traditionally, ILD patients have relied on self-monitoring and management methods like home oxygen therapy [4]. However, digital devices can further empower these patients by offering more granular, continuous data which can facilitate early intervention, enable detection of disease progression, and reduce healthcare costs [5,6].
Materials and method
We developed a cross-sectional survey with our patient partners (JC and JD) in the Exeter Patients in Collaboration for Pulmonary Fibrosis Research (EPIC-PF) group. The content and phrasing of the questions in the survey build evolved iteratively through discussions with ILD expert clinicians and patient partners via a series of online meetings over 6-months. The interdisciplinary supported self- management group at Royal Devon University Hospitals NHS Foundation Trust critically appraised the penultimate survey, built using the NHS-affiliated Survey-Monkey.com.
Results
Respondents from Europe, Asia, USA and Canada (n = 104) participated with 15 respondents excluded, as they did not have a diagnosis of ILD (Table 1). Eighty-nine respondents completed the survey. Forty-six (52%) were diagnosed with IPF. Thirty-four (38%) reported having a diagnosis for more than 5 years whilst 39% held a diagnosis 2–5 years (SI-1).
Discussion
This survey adds to existing literature in ILD on the perspectives and experiences of home-monitoring for healthcare providers, including the prevalence of use, experience, contemporary methods, enablers, and barriers [13,20,26,27]. A major contribution of this survey is to extend the research to cover people living with ILD, including patients’ usage and experience of a range of devices, and the utility of digital devices. Although the results of this mixed-methods survey have demonstrated that digital devices are widely used among patients with ILD, the views and perspectives regarding the use of these devices is varied.
Conclusions
We aimed to quantify patients’ usage and experiences of electronic devices in ILD. Our survey and analysis illustrate the extent to which patient expertise has the potential to drive health system priorities. Having lived through the COVID-19 pandemic, people with complex health conditions have learned how to navigate the challenges of self-monitoring and are influencing how we deliver routine healthcare. Our work demonstrates that digital approaches, are an important component of a supported self-management program but further work is needed to develop bespoke digital pathways of care tailored to individual needs.
Acknowledgments
We are grateful to the Exeter Patients in Collaboration for Pulmonary Fibrosis Research (EPIC-PF) group for their support with the survey design and distribution.
Citation: Althobiani MA, Shuttleworth R, Conway J, Dainton J, Duckworth A, Da Ponte AJ, et al. (2024) Supporting self-management for patients with Interstitial Lung Diseases: Utility and acceptability of digital devices. PLOS Digit Health 3(1): e0000318. https://doi.org/10.1371/journal.pdig.0000318
Editor: Haleh Ayatollahi, Iran University of Medical Sciences, IRAN (ISLAMIC REPUBLIC OF)
Received: July 6, 2023; Accepted: November 13, 2023; Published: January 8, 2024
Copyright: © 2024 Althobiani et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Data Availability: The fully de-identified research data supporting this publication are openly available as S1 Data and at 10.6084/m9.figshare.24569851.
Funding: This work was supported by a Health Education England Population Health fellowship to RS. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of this manuscript. None of the other co-authors received specific funding for this work.
Competing interests: I have read the journal’s policy and the authors of this manuscript have the following competing interests: AMR reports grants, personal fees and other from Boerhinger Ingelheim, personal fees from Hoffman La Roche, outside the submitted work. AMR is a NIHR Senior Research Leader. The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research or the Department of Health and Social Care. MAG and SL report travel grants and honoraria from Boerhinger Ingelheim for speaking / participation at meetings outside the submitted work. JL has received research grants from GSK and Astra Zeneca outside the submitted work.
Source: https://journals.plos.org/digitalhealth/article?id=10.1371/journal.pdig.0000318#ack
