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Supporting self-management for patients with Interstitial Lung Diseases: Utility and acceptability of digital devices [1]

['Malik A. Althobiani', 'Department Of Medicine', 'University College London', 'London', 'United Kingdom', 'Rebecca Shuttleworth', 'Respiratory Medicine', 'Royal Devon University Healthcare Nhs Foundation Trust', 'Exeter', 'John Conway']

Date: 2024-02

Abstract Introduction 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. Methods A team of expert clinicians and patient partners interested in self-management approaches designed a 48-question cross-sectional electronic survey; specifically targeted at individuals diagnosed with ILD. The survey was critically appraised by the interdisciplinary self-management group at Royal Devon University Hospitals NHS Foundation Trust during a 6-month validation process. The survey was open for participation between September 2021 and December 2022, and responses were collected anonymously. Data were analysed descriptively for quantitative aspects and through thematic analysis for qualitative input. Results 104 patients accessed the survey and 89/104 (86%) reported a diagnosis of lung fibrosis, including 46/89 (52%) idiopathic pulmonary fibrosis (IPF) with 57/89 (64%) of participants diagnosed >3 years and 59/89 (66%) female. 52/65(80%) were in the UK; 33/65 (51%) reported severe breathlessness medical research council MRC grade 3–4 and 32/65 (49%) disclosed co-morbid arthritis or joint problems. Of these, 18/83 (22%) used a hand- held spirometer, with only 6/17 (35%) advised on how to interpret the readings. Pulse oximetry devices were the most frequently used device by 35/71 (49%) and 20/64 (31%) measured their saturations more than once daily. 29/63 (46%) of respondents reported home-monitoring brought reassurance; of these, for 25/63 (40%) a feeling of control. 10/57 (18%) felt it had a negative effect, citing fluctuating readings as causing stress and ‘paranoia’. The most likely help-seeking triggers were worsening breathlessness 53/65 (82%) and low oxygen saturation 43/65 (66%). Nurse specialists were the most frequent source of help 24/63 (38%). Conclusion: Patients can learn appropriate technical skills, yet perceptions of home-monitoring are variable; targeted assessment and tailored support is likely to be beneficial.

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.

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]. Digital devices are commonly suggested for all individuals with ILD in order to improve their ability to manage and monitor their condition [7]. However, the importance of these devices is most evident for those who experience long-term breathlessness and psychological discomfort [6]. Home monitoring via commercially available devices that measure physiological parameters and symptoms may provide clinicians and patients with access to more precise continuous data on disease progression, the rate of acute exacerbations, and effects on quality of life [6–14]. This enables the development of personalized treatment approaches in this cohort [6,8–12,15]. Supported self-management measures monitor the progression of a patient’s condition objectively, with digital technologies and subjectively, through the completion of patient-reported measures capturing symptom experiences and health-related quality-of-life (HRQOL) [6,12,16]. The use of digital devices, in this context, aligns with the need for early intervention and cost-effective management, reinforcing their relevance and utility for patients with ILD [6,12,15]. This approach requires support from the dedicated interdisciplinary ILD team with effective and efficient communications across the wider interdisciplinary healthcare team including primary care [7,17]. The National Institute for Health and Care Excellence (NICE) guidelines (2017), recommended that the minimally required members of an ILD team include a physician, radiologist, specialist nurse, and MDT coordinator [18]. In more complex diagnostic or treatment situations, the team should also involve thoracic surgeons, histopathologists, rheumatologists, occupational physicians, and geneticists [18]. Innovative approaches to healthcare emerged during the COVID-19 pandemic with increased interest in more readily available and affordable digital devices [7,19]. Remote monitoring programs are increasingly embedded in clinical care [7,13,14,16,20], e.g. in the UK the ‘COVID Oximetry@home’ service remotely monitors peripheral oxygen saturation (SpO 2 ) in patients at risk of deterioration due to ‘silent’ hypoxia to target care and greater efficient use of National Health Service (NHS) resources [21]. The utilization of digital health tools to assist patients with ILD, specifically, idiopathic pulmonary fibrosis (IPF), has risen in the United Kingdom between 2016 and 2022 [12,14,15,22]. It is challenging for clinicians and patients to address the healthcare needs of those living with ILD. The introduction of digital devices as an effective and efficient solution might not be the panacea some perceive. Such devices, address some needs but create others that were unanticipated including large amounts of data that patients may require feedback on and psychosocial challenges that cannot be ignored. We know that these patients use devices to self-monitor their health and well-being but, little is known about the range of devices, selection, frequency of use and overall utility [6,14,23]. We aimed to characterize the types of digital devices used by people with ILD for home-monitoring purposes, outside remote monitoring programs. This work was subjected to critical peer review by the Respiratory Specialty Governance Group and registered as a service improvement project at Royal Devon University Hospitals NHS Foundation Trust/UK (ID:20–4946).

Methods 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. The 48-question survey was divided into 5 sections: 1. respondents’ characteristics / demographics, 2. types of devices in use, 3. frequency of device use, 4. technology used and 5. factors influencing choice and use of devices. If a respondent answered that they did not use a certain type of device, skip logic was applied eliminating the subsequent more detailed questions relating to this specific device. A further question requested additional comments to capture qualitative experiential data. A survey preamble of clear concise instructions provided email contact details for the survey team for any concerns or queries. The brief clearly stated that the survey was specifically for people diagnosed with ILD; those who were not diagnosed with ILD were consequently excluded from the study. This international survey was open for participation from September 2021 to December 2021. It was anonymous with clear information on how data collected would be used. Respondents had the option to add their contact details at the end of the survey to receive an update on the results. Assistance with translation and accessibility of the survey was available via email contact. The direction of response categories was consistent for ease and included a mixture of binary and 4- point Likert scaled responses. Four response categories are regarded as the absolute minimum and selecting an even number removed the predilection for the middle ground [24]. The survey started with general questions to qualify respondents and introduce the topic followed by specific questions and finishing with general, easy-to-answer demographic questions. This approach was to promote engagement, decrease drop-out rates and improve the quality of the experience. We piloted the survey in our EPIC group to assess structure and flow prior to distributing via national ILD support groups and the social media channel (Twitter ‘X’). The survey was open for three months and re-promoted at monthly intervals. We present data by the number of respondents and percentage proportionate to the total number of responses per item. Qualitative data, transcribed according to accepted practice underwent thematic analysis, coding and organization using NVIVO (Lumivero formerly QSR International) software [25]. The study team consisted of three mixed methods researchers experienced in qualitative approaches and survey design (AMR; MA and RS). Informed consent from participants was obtained prior to opening the questionnaire.

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. The introduction of digital devices as an effective and efficient solution might not be the panacea some perceive. Digital devices address some needs but create others that were unanticipated, including large amounts of data that patients may require feedback on and psychosocial challenges that cannot be ignored. Our findings show that interest in digital devices seems to stem from the perceived positive effects of using home-monitoring devices, which have provided “reassurance”, “confirmation”, “peace of mind” and “self-management support” during home-monitoring. In contrast, some respondents have also found home-monitoring devices to bring “worries” and “anxiety”, in part due to “inaccurate” and “insignificant support”. Specifically, patients with IPF where the condition had progressed to a certain stage where symptoms were more apparent and where carrying out the task (e.g. spirometry) would trigger coughing and give unreliable results, which demotivated and discouraged further use. Our findings mirror those of previous studies, in which remote monitoring was reported to be acceptable among patients with ILD [7–9,11,12,14,28–30]. In a 24-week randomized control trial, Moor et al. [11] demonstrated that home-monitoring was appreciated and highly acceptable to patients. Edwards et al. [8]. used a mobile app and home spirometry in patients with IPF for six weeks and found that patients were happy and wished to continue using the apps at the end of the study. The findings further elaborate on how self-monitoring using digital devices helps patients with ILD to contact their GP or ILD specialists regarding medication side effects and therapy response. Broos et al. [31] and Moor et al. [11] similarly demonstrated that home-monitoring assisted continuous evaluation of the patient’s response to therapy and allowed for individualized treatment adjustment. Our results also illustrate that digital devices allow patients with ILD to exercise control over their health. The greatest benefit expressed was knowing when to seek medical help or attention due to self-monitored results. Our findings agree with previously published studies, demonstrating that involving patients in monitoring their own health gives them feeling of being in control over their own health status [9,32,33]. Respondents were reassured by their use of home-monitoring devices, particularly in relation to oxygen saturation monitoring. This implies that digital devices may have an effect on the daily experiences of patients with ILD. This valuable finding sheds light on the need to continuously support future users of digital devices. Participants reported that utilizing mobile applications and wearables can be an effective way to promote physical activity. Wallaert et al. [34] and Root et al. [35] highlighted the importance of daily physical activity for patients with IPF in managing their condition, whilst Bahmer et al. [35,36] demonstrated that there is a link between progression of IPF and decreased physical activity. These digital devices can be useful in providing patients with real-time feedback on their physical activity levels, personalized goals, and reminders to stay active, which can improve adherence to exercise regimes and enhance the quality of life for patients with IPF. Despite the encouraging results of using digital devices, our study found several challenges and obstacles in relation to the use of home-monitoring devices among patients with ILD and IPF, more specifically. These challenges and obstacles experienced by patients are consistent with prior studies of patients with ILD [14,37]. Our findings revealed that the use of home-monitoring devices may create additional anxiety for patients with ILD. Many patients reported feeling anxious about low readings from the devices, even when they were not experiencing increased breathlessness. It is worth noting that anxiety is a common comorbidity among people with IPF [38]. Additionally, patients have expressed doubts about the accuracy of the information provided by home-monitoring devices, and this lack of confidence can be further intensified by a lack of support. Consistent with previous research, the results reveal that digital devices may influence self-perception and self-image in relation to health status. Self-monitoring via home-based digital devices is related to an obsession with readings and is found to be a constant reminder of living with an illness and diagnosis [23,37]. Thus, it can be a source of anxiety and worry among patients with ILD [39,40]. Secondly, our findings show that a lack of adequate support, such as insufficient training, barriers to access, and inadequate knowledge among non-specialist staff, can impede the effectiveness of remote monitoring interventions. Moor et al. [11] found that providing sufficient training and easy access to a helpdesk for technical issues, as well as real-time alerts and feedback, significantly increased adherence to home-monitoring with handheld spirometry during a 24-week randomized controlled trial [11]. As a result, we argue that it is essential for remote monitoring programs to include a dedicated hotline and helpdesk for technical support and that there is a need for support groups for ongoing assistance. However, alternative forms of support, such as email or asynchronous communication, should also be considered to ensure that the program is cost-effective, while still providing the necessary support to participants. Thirdly, our results identified technical difficulties as a major challenge for patients with ILD, specifically in terms of the lack of technical support to address the troubleshoot these issues. While previous studies have shown that both daily [8,10,12,29,41], and weekly [7,9] home based spirometry measurements are acceptable and easy [42], our findings show that these technical difficulties can impede the use of these devices. These findings are consistent with previous research on remote monitoring of ILD patients, where Maher and colleagues [41,43] reported technical problems that prevented the primary endpoint analysis of spirometry measurements. Future implications Patients with ILD are at risk of disease progression including deterioration of lung function over time [44]. The risk of disease progression depends on the specific type of ILD, as well as the individual patient’s disease course [45]. Early access to digital devices during the treatment pathway, while individuals are actively seeking information and education, has the potential to provide greater benefits and encourage positive lifestyle changes [16]. The use of digital devices is becoming integral to the overall monitoring and support framework and standard of care for patients. Such approaches can empower patients to measure and monitor the progression of their condition objectively. Using commercially available devices (e.g. wearables, handheld spirometry, non-contact monitors, and mobile apps) could allow early intervention for managing ILD and slowing the rate of deterioration. We must be mindful of difficulties in using devices or getting reliable results for individuals where the condition had progressed or when symptoms are more apparent. Of the 58 respondents who added comments 29 reported that the measurements they obtained were variable, 18 that these were stable. To ensure the success of these interventions, our findings highlight the importance of addressing the following: Adequate financial resources

Meaningful patient involvement in the design of supported self-management programs

Shared decision-making to inform adaptation/cessation of device usage when the burden may outweigh the benefits.

Accessibility of cost-effective home-monitoring equipment

Training in the utilization of digital devices and interpretation of data for patients and clinicians

Technical support for addressing issues related to digital devices

Effective communication between healthcare providers and patients regarding results and timely action planning

Need for more evidence e.g. RCTs Strengths and limitations The strength of this survey is that it captures both qualitative and quantitative information on remote monitoring in patients with ILD and is the first of its kind in ILD in the UK. It demonstrates an appetite and motivation to self-monitor. The survey has some limitations, for example, the representativeness of the sample, as the participants were predominantly from the UK and self-selecting. The distribution was exclusively electronic and reliant on non-governmental organizations and Twitter so necessitated some social engagement and digital literacy. Whilst men use the Internet more for informational purposes, women’s usage is reported to be more for social and expressive purposes [46], which may explain the higher female response rate in this survey, unexpected in an ILD population, particularly IPF a male dominant condition. Whilst people’s use of social media, and other methods has increased as a consequence of the COVID-19 pandemic, we may not have captured the perspectives of lower-income and minority populations. Notably, we did not receive any request for translation of the survey.

Conclusion 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. This requires solution focused thinking to meet the needs of wide ranging digital abilities in those with chronic health conditions and political commitment to optimize wifii connections for those in rural and harder to reach communities, the very people most likely to benefit from supportive self-management approaches. Health economic evaluation of digital care pathways is very much needed alongside an in-depth exploration of the impact of home monitoring using digital devices on the family dynamic. Digital devices will continue to be embedded in our lives and they yield clinically useful data as a component of not a replacement for traditional models of healthcare.

Supporting information S1 Data. Digital devices ILD survey de-identified data set. CSV files contains raw survey data questions as asked and participants responses available at 10.6084/m9.figshare.24569851 https://doi.org/10.1371/journal.pdig.0000318.s001 (CSV)

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.

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