JMIR Publications

ABSTRACT

Background:

Interstitial lung diseases (ILDs), a group of parenchymal lung disorders, present with varying degrees of inflammation and fibrosis which lead to symptoms such as progressive breathlessness, impaired quality-of-life (QoL) and reduced life expectancy. Patients with ILD can experience sudden worsening of their condition, known as an acute exacerbation, which is associated with inappropriate hospital admissions, concomitant NHS costs, impaired QoL and high mortality. The heterogeneity of ILDs, unpredictability of acute exacerbations, and significant variation in disease progression and response to treatment present numerous management challenges. Standard care typically involves 3 to 6 monthly hospital outpatient visits to monitor disease and assess response to treatment. Home monitoring with remote review of spirometry, pulse oximetry and patient reported measures (PRMs) offers an alternative approach to in-person clinic review and/or laboratory-based physiological measurements. Clinical trials indicate home monitoring of patients with ILD is acceptable and results correlate with laboratory-based pulmonary function tests (PFTs). The impact of implementing home monitoring for patients with ILD in a real-world setting is not well understood.

Objective:

We aim to evaluate the safety, effectiveness and acceptability of home monitoring with standard care in the management of patients with ILD.

Methods:

This study has been registered as a quality improvement project at Guy’s and St Thomas’ NHS Foundation Trust (GSTT), reference 13660, and Royal Devon University Healthcare NHS Foundation Trust (RDU), reference 24-1378. The project has been co-designed by the steering group including clinicians, researchers, technology partner, patient advocacy charity and patients diagnosed with ILD. Patients who meet the inclusion criteria will be provided a handheld spirometer, pulse oximeter and access to patientMpower, an electronic health application, on their smart devices and followed up for 12 months. All participants will be asked to complete at least once weekly home spirometry and pulse oximetry measurements and 3-monthly PRMs including outcome, engagement and experience measures, using the patientMpower application. Results will be available to the clinicians in real-time and used to monitor disease progression, symptoms and QoL and to assess treatment response.

Results:

This study was funded by NHS Digital in September 2021. Patient recruitment and data collection started in March 2022. At January 2024, 186 patients were enrolled. All patients will have home monitoring for at least 12 months. Results are expected to be published autumn/winter 2025.

Conclusions:

We hypothesise home monitoring will be effective, safe and acceptable for patients with ILD and result in circa a 50% reduction in routine laboratory-based PFTs and in-person clinic consultations.