Promise and Pitfalls of Home Monitoring for Interstitial Lung Disease


During the pandemic, interest in home monitoring grew, and research has shown it can be feasible for patients with interstitial lung disease, according to a presentation at the European Respiratory Society International Congress 2021.

Interest in home monitoring for diseases such as interstitial lung disease (ILD) is increasing, especially during the COVID-19 pandemic, and research has shown it is not only feasible, but successful, Marlies S. Wijsenbeek, MD, PhD, pulmonary physician at the Erasmus MC University Medical Centre in Rotterdam, the Netherlands, explained during a session at the European Respiratory Society International Congress 2021.

A survey of almost 300 doctors globally found that they would like more home monitoring than is currently being done.1 Currently, almost 40% are monitoring symptom scores and side effects, and about 30% are monitoring home-based oxygen saturation, which really took off during the pandemic, she said. However, less than one-fourth are monitoring quality-of-life measures, home spirometry, and physical activity/exercise.

However, the same survey found that more than 60% would prefer to be monitoring all of these. The most popular were home-based oxygen saturation (more than 90%) and symptom scores and side effects (more than 80%).

“There is a lot of interest in home monitoring,” Wijsenbeek said.

Nearly all respondents cited the added value of online home monitoring for improving quality of care, while more than half said research and registry purposes.

Home spirometry is the most common way of home monitoring ILD, and it has the most data. Other popular home monitoring methods are patient-reported outcomes, symptom scores, and step counters.

When home spirometry started being researched, patients would report metrics that would be read out in clinic. Since then, Wijsenbeek said, systems have become more advanced and allow for real-time transmission of data with quality feedback to patients.

Several studies have also shown that home and clinical spirometry correlate well. The relative variability of home spirometry is comparable with the forced vital capacity (FVC) measurements taken in clinic, she said. One caveat is that studies have shown measurements are not as accurate over the long term.

Research has also shown that home spirometry adherence is good with about 86% of patients providing at least 1 measurement a week after a year.2

While daily measurements are usually the goal, “it’s a pain for patients,” Wijsenbeek explained. A study of patients with systemic sclerosis–associated ILD looked at daily and weekly measurements and found less variation in the weekly FVC measurements.3 The patients doing weekly measurements were performing 3 consecutive measurements, instead of just 1, and the best of the 3 was chosen, which is close to the in-hospital system, she said.

While there was no meaningful difference in quality of life after half a year of home monitoring, there was an improvement in psychological well-being and patient satisfaction.4

“They really appreciated the system, and the majority of these patients would also recommend this system to others,” Wijsenbeek said. In addition, the patients receiving home monitoring reported feeling more secure, like there was a lower threshold for communication, and that there were more medication adjustments.

Having the system already in place allowed Wijsenbeek in the Netherlands to scale up during the COVID-19 pandemic once reimbursement was negotiated for patients with ILD to receive home spirometry.

Almost 300 patients in the Netherlands with ILD have been using the system and 98% of them reported wanting to continue even when care returns to normal, according to unpublished data. About half of out-patient visits were replaced by home monitoring and patient satisfaction was high (8 out of 10).

“So, I think this is promising for patients and doctors,” she said.

The STARLINER study analyzed digital health and home monitoring for diagnosis of patients who presented with suspected ILD.5 The patients were given a spirometer, an accelerometer, and a tablet to start doing measurements at home. They would then upload the measurements to a digital platform where a tertiary referral center and the community center could review and facilitate the diagnosis without the patient having to visit multiple locations.

In addition to diagnosis, home monitoring can assist inform prognosis, Wijsenbeek said. A study from 2016 found that the rate of decline in the first 3 months of home monitoring predicted mortality after 2 years6; however, she noted that the results have not been reproduced. Similarly, a 2020 study found that variability in the first 28 days of home monitoring was predictive of whether the patient would remain stable or be progressive.7 The more variability patients had, the more progressive their disease, in the end.

While there are many benefits, there are pitfalls with home monitoring. In order to ensure quality, providers have to clearly instruct patients on what to do and they need access to good algorithms that can learn and provide feedback, Wijsenbeek said.

There are also some implementation questions regarding home monitoring that should be considered, such as the effect it will have on care and outcomes, the optimal frequency of measurements, legislation issues, if it will promote equal access to care, if it is a good fit for patients and doctors, and any reimbursement issues.

However, she believes there are still many advantages, such as less travel for patients, continuity of care during the pandemic, patient empowerment, and closer monitoring for care and research.

Overall, the data show that home spirometry in ILD is feasible and reliable for regular care, safety monitoring can be used in trial settings, Wijsenbeek said. In addition to informing prognosis and response to therapy, home spirometry empowers patients to be a partner in their care and research, she said.

“There are still practical and analytical challenges, but these can be overcome, I believe,” Wijsenbeek concluded. “And I think we need more research for the optimization and integration in care. But still, I’m optimistic.”


1. Nakshbandi G, Moor CC, Johannson KA, Maher TA, Kreuter M, Wijsenbeek MS. Worldwide experiences and opinions of healthcare providers on eHealth for patients with interstitial lung diseases in the COVID-19 era. ERJ Open Res. Published online August 31, 2021. doi:10.1183/23120541.00405-2021

2. Noth I, Cottin V, Chaudhuri N, et al. Home spirometry in patients with idiopathic pulmonary fibrosis: data from the INMARK trial. Eur Respir J. 2021;58(1):2001518. doi:10.1183/13993003.01518-2020

3. Moor CC, van Leuven SI, Wijsenbeek MS, Vonk MC. Feasibility of online home spirometry in systemic sclerosis-associated interstitial lung disease: a pilot study. Rheumatology (Oxford). 2021;60(5):2467-2471. doi:10.1093/rheumatology/keaa607

4. Moor CC, Mostard RLM, Grutters JC, et al. Home monitoring in patients with idiopathic pulmonary fibrosis. a randomized controlled trial. Am J Respir Crit Care Med. 2020;202(3):393-401. doi:10.1164/rccm.202002-0328OC

5. Wijsenbeek M, Bendstrup E, Valenzuela C, et al. Design of a study assessing disease behaviour during the peri-diagnostic period in patients with interstitial lung disease: the STARLINER study. Adv Ther. 2019;36(1):232–243. doi:10.1007/s12325-018-0845-3

6. Russell A-M, Adamali H, Molyneaux PL, et al. Daily home spirometry: an effective tool for detecting progression in idiopathic pulmonary fibrosis. Am J Respir Crit Care Med. 2016;194(8):989-997. doi:10.1164/rccm.201511-2152OC

7. Veit T, Barnikel M, Crispin A, et al. Variability of forced vital capacity in progressive interstitial lung disease: a prospective observational study. Respir Res. 2020;21(1):270. doi:10.1186/s12931-020-01524-8

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