Home Monitoring in Interstitial Lung Disease: Protocol for a Real-World Observational Study
BackgroundInterstitial 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...
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JMIR Publications
2025-06-01
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| Series: | JMIR Research Protocols |
| Online Access: | https://www.researchprotocols.org/2025/1/e65339 |
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| author | Marium Naqvi Rebecca Borton Sarah Lines Joanne Dallas Jessica Mandizha Howard Almond Colin Edwards Wendy Adams Michael Gibbons Anne-Marie Russell Alex West |
| author_facet | Marium Naqvi Rebecca Borton Sarah Lines Joanne Dallas Jessica Mandizha Howard Almond Colin Edwards Wendy Adams Michael Gibbons Anne-Marie Russell Alex West |
| author_sort | Marium Naqvi |
| collection | DOAJ |
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BackgroundInterstitial 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 a sudden worsening of their condition, known as an acute exacerbation, which is associated with inappropriate hospital admissions, concomitant National Health Service (NHS) costs, impaired QoL, and high mortality. The heterogeneity of ILDs, the unpredictability of acute exacerbations, and significant variation in disease progression and response to treatment present numerous management challenges. Standard care typically involves 3-6 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 offers an alternative approach to in-person clinic review and 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.
ObjectiveWe aim to evaluate the safety, effectiveness, and acceptability of home monitoring with standard care in the management of patients with ILD.
MethodsThis study has been registered as a quality improvement project at Guy’s and St Thomas’ NHS Foundation Trust (reference 13660) and Royal Devon University Healthcare NHS Foundation Trust (reference 24-1378). The project has been co-designed by the steering group, including clinicians, researchers, technology partners, a 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 app, 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 patient-reported measures, including outcome, engagement, and experience measures, using the patientMpower app. Results will be available to the clinicians in real time and used to monitor disease progression, symptoms, and QoL, and to assess treatment response.
ResultsThis study was funded by NHS Digital in September 2021. Patient recruitment and data collection started in March 2022. By January 2024, 186 patients were enrolled. All patients will have home monitoring for at least 12 months. Results are expected to be published at the end of 2025.
ConclusionsWe hypothesize home monitoring will be safe, effective and acceptable for patients with ILD and result in a 50% reduction in routine laboratory-based pulmonary function tests and in-person clinic consultations.
International Registered Report Identifier (IRRID)DERR1-10.2196/65339 |
| format | Article |
| id | doaj-art-793c929ec8814d4081bf1dfecb7c2ae2 |
| institution | Kabale University |
| issn | 1929-0748 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | JMIR Publications |
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| series | JMIR Research Protocols |
| spelling | doaj-art-793c929ec8814d4081bf1dfecb7c2ae22025-08-20T03:44:51ZengJMIR PublicationsJMIR Research Protocols1929-07482025-06-0114e6533910.2196/65339Home Monitoring in Interstitial Lung Disease: Protocol for a Real-World Observational StudyMarium Naqvihttps://orcid.org/0009-0008-0351-9031Rebecca Bortonhttps://orcid.org/0000-0002-2292-4103Sarah Lineshttps://orcid.org/0009-0003-4696-8295Joanne Dallashttps://orcid.org/0009-0005-4467-3906Jessica Mandizhahttps://orcid.org/0000-0002-5218-4732Howard Almondhttps://orcid.org/0000-0001-5042-4168Colin Edwardshttps://orcid.org/0000-0002-5175-9020Wendy Adamshttps://orcid.org/0000-0002-2459-7695Michael Gibbonshttps://orcid.org/0000-0001-7099-1872Anne-Marie Russellhttps://orcid.org/0000-0002-0468-3537Alex Westhttps://orcid.org/0000-0001-6110-1508 BackgroundInterstitial 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 a sudden worsening of their condition, known as an acute exacerbation, which is associated with inappropriate hospital admissions, concomitant National Health Service (NHS) costs, impaired QoL, and high mortality. The heterogeneity of ILDs, the unpredictability of acute exacerbations, and significant variation in disease progression and response to treatment present numerous management challenges. Standard care typically involves 3-6 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 offers an alternative approach to in-person clinic review and 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. ObjectiveWe aim to evaluate the safety, effectiveness, and acceptability of home monitoring with standard care in the management of patients with ILD. MethodsThis study has been registered as a quality improvement project at Guy’s and St Thomas’ NHS Foundation Trust (reference 13660) and Royal Devon University Healthcare NHS Foundation Trust (reference 24-1378). The project has been co-designed by the steering group, including clinicians, researchers, technology partners, a 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 app, 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 patient-reported measures, including outcome, engagement, and experience measures, using the patientMpower app. Results will be available to the clinicians in real time and used to monitor disease progression, symptoms, and QoL, and to assess treatment response. ResultsThis study was funded by NHS Digital in September 2021. Patient recruitment and data collection started in March 2022. By January 2024, 186 patients were enrolled. All patients will have home monitoring for at least 12 months. Results are expected to be published at the end of 2025. ConclusionsWe hypothesize home monitoring will be safe, effective and acceptable for patients with ILD and result in a 50% reduction in routine laboratory-based pulmonary function tests and in-person clinic consultations. International Registered Report Identifier (IRRID)DERR1-10.2196/65339https://www.researchprotocols.org/2025/1/e65339 |
| spellingShingle | Marium Naqvi Rebecca Borton Sarah Lines Joanne Dallas Jessica Mandizha Howard Almond Colin Edwards Wendy Adams Michael Gibbons Anne-Marie Russell Alex West Home Monitoring in Interstitial Lung Disease: Protocol for a Real-World Observational Study JMIR Research Protocols |
| title | Home Monitoring in Interstitial Lung Disease: Protocol for a Real-World Observational Study |
| title_full | Home Monitoring in Interstitial Lung Disease: Protocol for a Real-World Observational Study |
| title_fullStr | Home Monitoring in Interstitial Lung Disease: Protocol for a Real-World Observational Study |
| title_full_unstemmed | Home Monitoring in Interstitial Lung Disease: Protocol for a Real-World Observational Study |
| title_short | Home Monitoring in Interstitial Lung Disease: Protocol for a Real-World Observational Study |
| title_sort | home monitoring in interstitial lung disease protocol for a real world observational study |
| url | https://www.researchprotocols.org/2025/1/e65339 |
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