Health status &amp; impact of living with idiopathic pulmonary fibrosis (IPF): UK &amp; Ireland Delphi survey

Russell, Anne-Marie; Jones, Georgina; Sabella, Ruth; Cassidy, Nicola; Burge, Geraldine; Lines, Sarah; Stanley, Louise; Fletcher, Sophie; Weallans, Malcolm; Bray, Mike; Fleming, Steven T.; Maher, Toby; Cullinan, Paul

doi:10.1183/13993003.congress-2016.oa4573

Cited by 2 publications

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“…Video-based training on the correct use of patientMpower and home-based spirometry was provided on a dedicated YouTube channel [ 12 ]. Participants were asked to record the following data via the app: FVC (one forced expiratory maneuver per day, seated), breathlessness (using the modified Medical Research Council [mMRC] score, once a day), step count, medication adherence, symptoms, and impact of IPF on daily life (using PROM scores) [ 5 ]. The IPF-PROM consisted of an overall quality of life question and 12 questions covering 4 domains: physical impacts of breathlessness, psychological impacts of breathlessness, psychological well-being, and fatigue.…”

Section: Methodsmentioning

confidence: 99%

“…There was a lack of digital platforms created specifically for patients with IPF, and there were few disease-specific instruments to assess health-related quality of life with IPF. The IPF patient-reported outcome measure (IPF-PROM) captures symptom experience and impact of IPF on patients’ daily lives [ 5 ]. The collection of serial IPF-PROM data provides valuable information on longitudinal trends at individual and population levels.…”

Section: Introductionmentioning

confidence: 99%

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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

Edwards¹,

Costello²,

Cassidy³

et al. 2020

JMIR Mhealth Uhealth

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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.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Edwards¹,

Costello²,

Cassidy³

et al. 2020

JMIR Mhealth Uhealth

Self Cite

View full text Add to dashboard Cite

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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 (Preprint)

Edwards¹,

Costello²,

Cassidy³

et al. 2019

Preprint

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BACKGROUND Daily home spirometry in idiopathic pulmonary fibrosis (IPF) has been shown to be feasible and clinically informative. The patientMpower electronic health journal (pMp) is an application to facilitate home spirometry with the addition of home monitoring of IPF-related symptoms. pMp is downloaded to the user’s mobile phone or tablet device to enable them to record objective and subjective data. OBJECTIVE We report on one year’s experience of using pMp with home spirometry in 36 subjects with self-reported pulmonary fibrosis (PF) treated with usual care. METHODS Participants enrolled in the programme were recruited through one of two patient advocacy groups: Irish Lung Fibrosis Association, Ireland or PF Warriors, US [baseline mean predicted Forced Vital Capacity (FVC): 64% and 62%, respectively]. Participants in each population were recruited to identical open-label, single-group observational studies and were provided with a Spirobank Smart spirometer which integrated directly via Bluetooth with pMp. Data collected via pMp included: FVC (once/day; seated); breathlessness (modified Medical Research Council score), step count, medication adherence, symptoms and impact of IPF on daily life [patient-reported outcome measure (PROM) specifically developed for IPF]. RESULTS Thirty-six participants used pMp and provided spirometry data. A large majority reported that using pMp was positive and wished to continue using it after an initial 6-week observation. Twenty-one participants (58%) recorded home spirometry without prompting for ≥180 days and 9 (25%) continued with recording home spirometry for ≥360 days. Longitudinal patient-reported data on breathlessness, oximetry, oxygen consumption and impact of IPF on quality of life were also collected. CONCLUSIONS The pMp application with associated Bluetooth-connected devices (e.g. spirometer, pulse oximeter) offers an acceptable and accessible approach to the collection of patient-reported objective and subjective data in fibrotic lung conditions. CLINICALTRIAL Not registered

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Health status & impact of living with idiopathic pulmonary fibrosis (IPF): UK & Ireland Delphi survey

Cited by 2 publications

References 0 publications

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

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

Use of the patientMpower App With Home-Based Spirometry to Monitor the Symptoms and Impact of Fibrotic Lung Conditions: Longitudinal Observational Study (Preprint)

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