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Use of the Patientmpower App with Home-Based Spirometry to Monitor the Symptoms and Impact of Fibrotic Lung Conditions: Longitudinal Observational Study

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Use of the Patientmpower App with Home-Based Spirometry to Monitor the Symptoms and Impact of Fibrotic Lung Conditions: Longitudinal Observational Study JMIR MHEALTH AND UHEALTH Edwards et al Original Paper Use of the patientMpower App With Home-Based Spirometry to Monitor the Symptoms and Impact of Fibrotic Lung Conditions: Longitudinal Observational Study Colin Edwards1, PhD; Eamonn Costello1, BEng; Nicola Cassidy2; Bill Vick3; Anne-Marie Russell4,5, PhD, MSc, ATSF 1patientMpower Ltd, Dublin, Ireland 2Irish Lung Fibrosis Association, Dublin, Ireland 3PF Warriors, Plano, TX, United States 4Imperial College Healthcare NHS Trust, London, United Kingdom 5University of Exeter College of Medicine and Health, Exeter, United Kingdom Corresponding Author: Colin Edwards, PhD patientMpower Ltd 21 Denzille Lane Saint Peter©s Dublin, D02 EY19 Ireland Phone: 353 872599131 Email: [email protected] Abstract Background: Daily home-based spirometry in idiopathic pulmonary fibrosis (IPF) has been shown to be feasible and clinically informative. The patientMpower app facilitates home-based spirometry along with home-based monitoring of IPF-related symptoms. The patientMpower app can be downloaded to the user's mobile phone or tablet device, enabling the recording of objective and subjective data. Objective: The aim of this paper is to report on the 1-year experience of using patientMpower with home-based spirometry by 36 participants with self-reported pulmonary fibrosis (PF) treated with usual care. Methods: Self-selecting participants enrolled in this community-based participatory research program through a patient advocacy group in their country: Irish Lung Fibrosis Association in Ireland and PF Warriors in the United States. Disease severity was comparable with a baseline mean predicted forced vital capacity (FVC) of 64% and 62% in the Irish and US participants, respectively. Both groups of participants were allocated to identical, in-country, open-label, single-group observational studies and were provided with a Bluetooth-active Spirobank Smart spirometer integrated directly with patientMpower. Data collected via patientMpower included seated FVC (daily), breathlessness grade (modified Medical Research Council scale score), step count, medication adherence, and symptoms and impact of IPF on daily life, which were measured by a patient-reported outcome measure (PROM) scale that was specifically developed for IPF. Longitudinal patient-reported data on oximetry and oxygen consumption were also collected. Results: A large majority of the 36 participants reported that their experience using patientMpower was positive, and they wanted to continue its use after the initial 6-week observation. Out of 36 participants, 21 (58%) recorded home-based spirometry without prompting for ≥180 days, and 9 (25%) participants continued with recording home-based spirometry for ≥360 days. Conclusions: The patientMpower app with associated Bluetooth-connected devices (eg, spirometer and pulse oximeter) offers an acceptable and accessible approach to collecting patient-reported objective and subjective data in fibrotic lung conditions. (JMIR Mhealth Uhealth 2020;8(11):e16158) doi: 10.2196/16158 KEYWORDS idiopathic pulmonary fibrosis; pulmonary fibrosis; eHealth; mHealth; patient-reported outcome measure; spirometry; home spirometry; patient experience; digital health; patient advocacy http://mhealth.jmir.org/2020/11/e16158/ JMIR Mhealth Uhealth 2020 | vol. 8 | iss. 11 | e16158 | p. 1 (page number not for citation purposes) XSL·FO RenderX JMIR MHEALTH AND UHEALTH Edwards et al present the 1-year follow-up of these studies designed to test Introduction the acceptability and utility of patientMpower. Pulmonary fibrosis (PF) is an irreversible lung disease that leads to progressive breathlessness and deterioration of pulmonary Methods function; it is associated with significant limitation of physical We conducted 2 parallel studies of the same design and activities and worsening quality of life [1]. The majority of PF methodology in 2 distinct populations (in the United States and cases are idiopathic, and there is no cure. The advent of Ireland). The studies were codesigned and conducted in disease-modifying/antifibrotic pharmacotherapies in the last collaboration with 2 advocacy groups for patients with PF: PF decade has slowed the progression of PF, with registry data Warriors, Texas, United States, and Irish Lung Fibrosis reporting an increase in median survival from 3 to 4.5 years. Association (ILFA), Dublin, Ireland. Our approach was not The progression of PF is highly variable. Acute exacerbations prescriptive, as we aimed to observe the real-world experience resulting in further impairment of lung function are a major of the integration of patientMpower into the daily lives of people cause of morbidity and mortality in idiopathic pulmonary with fibrotic lung conditions. fibrosis (IPF), reducing median survival to <21 months where hospitalization is needed [2]. The patient advocacy groups collaborated with us from the outset of this study, informing, reviewing, and approving the Adjunctive symptom-based management is integral to disease study concept and design and leading on the patient information management given the high symptom burden [3]. Objective documents prior to the initiation of the study. The study protocol assessments of lung function and symptom experience (including evolved iteratively, informed by the stakeholder and participant breathlessness and fatigue) are important in the monitoring of discussions and by peer review by health care professionals. patients with IPF to inform both their self-management and Our approach was not that of conventional science and was hospital-based care plan, particularly initiation and adjustment rather founded in an implementation science approach, working of oxygen therapy, pulmonary rehabilitation, palliative care, ªwithº participants instead of ªonº them. Participatory action and psychological therapies [4]. Traditional monitoring of IPF research seeks to empower participants to tailor an intervention has typically involved spirometric measurement of forced vital to suit their own contexts [11]. We were keen to ensure that capacity (FVC) along with the assessment of IPF-related patientMpower fitted into the context of an individual's life. symptoms at 6- and 12-month intervals in outpatient clinical When using such approaches, the area between settings. engagement/consultation and research is gray. Given that this Digital platforms which directly record patients' symptom work was led by patient advocacy groups and was focused on experiences and impacts of those symptoms on patients' daily increasing experiential knowledge and obtaining results within lives alongside objective clinical measurements (eg, blood a timeframe to determine how to scale up the use and pressure) have been developed for chronic medical conditions sustainability of patientMpower, we were informally advised to support patients in managing their health. There was a lack that approval from an institutional review board was not of digital platforms created specifically for patients with IPF, required. Nonetheless, in line with principles of good clinical and there were few disease-specific instruments to assess practice, all participants provided written informed consent health-related quality of life with IPF. The IPF patient-reported prior to accessing patientMpower and participating in any outcome measure (IPF-PROM) captures symptom experience study-specific procedures. Entry criteria included a diagnosis and impact of IPF on patients' daily lives [5]. The collection of of PF, ownership of a smartphone or tablet device, an email serial IPF-PROM data provides valuable information on address, access to the internet at home, and willingness to longitudinal trends at individual and population levels. provide written informed consent. Furthermore, home-based monitoring of FVC by patients using Each study was an open-label, single group, observational study small handheld spirometers is feasible, clinically informative, in patients with PF treated with usual care. After obtaining and more accurate in estimating lung function in patients with consent, participants were invited to download the IPF than intermittent spirometry performed at clinic visits, and patientMpower app and use it daily for ≥6 weeks (the active it may be of value as a primary endpoint in short observational study period). All participants were provided with proof-of-concept studies in IPF [6-8]. a Spirobank Smart spirometer (Medical International Research), The patientMpower app was developed to facilitate home-based which integrates directly via Bluetooth with patientMpower to spirometry and symptom monitoring in PF. Users download capture spirometry data. FVC data were displayed to each patientMpower to their mobile phones or tablet devices, enabling participant on their mobile device. Video-based training on the them to record both objective data (eg, FVC) and subjective correct use of patientMpower and home-based spirometry was data (eg, impact on quality of life) simultaneously. There are provided on a dedicated YouTube channel [12]. Participants few published data on longitudinal trends in patient-measured were asked to record the following data via the app: FVC (one FVC and patient-reported outcome measures (PROMs) in IPF. forced expiratory maneuver per day, seated), breathlessness Patient-reported data may predict important health outcomes (using the modified Medical Research Council [mMRC] score, (eg, exacerbations). We have previously reported on 6-week once a day), step count, medication adherence,
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