Is It Possible to Have Home E-Monitoring of Pulmonary Function in Our Patients with Duchenne Muscular Dystrophy in the COVID-19 Pandemic?—A One Center Pilot Study

Abstract

Background: Duchenne muscular dystrophy (DMD) is the most common, progressive, irreversible muscular dystrophy. Pulmonary function is crucial for duration of life in this disease. Currently, the European Respiratory Society is focused on digital health, seeking innovations that will be realistic for digital respiratory medicine to support professionals and patients during the COVID-19 pandemic. Aims: The aim of this study was to investigate whether it is possible to monitor pulmonary function at home using an individual electronic spirometry system in boys with Duchenne muscular dystrophy. Materials and methods: In this observational, prospective study, conducted from March 2021 to June 2021, twenty boys with DMD (aged 8–16) were enrolled. The patients were recruited from the Rare Disease Centre, University Clinical Centre, of Gdańsk, Poland. Medical history and anthropometric data were collected, and spirometry (Jaeger, Germany) was performed in all patients at the start of the study. Each patient received an electronic individual spirometer (AioCare) and was asked to perform spirometry on their own every day, morning and evening, at home for a period of 4 weeks. The number of measurements, correctness of performing measurements, forced vital capacity (FVC), forced expiratory volume in 1 s (FEV1), and peak expiratory flow (PEF) were evaluated. Results: Finally, 14 out of 20 boys enrolled in the study with a mean age of 12.5 years (7 non-ambulatory) applied and received a home spirometer (AioCare). A total of 283 measurements were performed by all patients at home for 4 weeks. Half of the patients were able to perform measurements correctly. There were no significant differences between mean values of FVC, FE1, PEF between home and hospital spirometry (p > 0.05) expect PEF pv% (p < 0.00046). Patients with higher FEV1 (p = 0.0387) and lower BMI (p = 0.0494) were more likely to take home spirometer measurements. The mean general satisfaction rating of home-spirometry was 4.33/5 (SD 0.78), the mean intelligibility rating was 4.83/5 (SD 0.58). Reasons for irregular measurements were: forgetting (43%), lack of motivation (29%), difficulty (14%), lack of time (14%). Conclusion: Home electronic monitoring of pulmonary function in patients with DMD is possible to implement in daily routines at home. This protocol should be introduced as early as possible in patients 7–8 years old with good, preserved lung function. Patients accept this form of medical care but require more education about the benefits of e-monitoring. There is a need to implement a system to remind patients of the use of electronic medical devices at home, e.g., via SMS (short message service).

Benefits of Telemonitoring of Pulmonary Function—3-Month Follow-Up of Home Electronic Spirometry in Patients with Duchenne Muscular Dystrophy

“…In our previous study, we showed that it is possible to make assessments of pulmonary function at home in patients with DMD [30]. The present study showed that lung monitoring in patients with neuromuscular diseases is not only possible but participants also benefit from using home spirometry electronic devices.…”

“…This prospective, control-case, open-label study was conducted from June 2021 to October 2021 as the third part of the project: "E-monitoring of the pulmonary function in patients with Duchenne muscular dystrophy undergoing respiratory rehabilitation at home"; details of the other parts were described elsewhere [30].…”

“…The participants were asked to perform on their own three correct spirometry measurements twice daily, morning and evening at home during a 12-week period. They performed measurements themselves with the help of caregivers after a previous 4-week training period of using AioCare device at home, which was described in another publication [30].…”

“…That is why we implemented a program for remote everyday monitoring of pulmonary function in DMD patients. In our previous study, we showed that it was possible to measure and monitor lung function at home by the patients themselves [30]. Currently, we wanted to evaluate what is the effect of using this method for the next three months on lung function in these patients.…”

Morbidity, Clinical Course and Vaccination against SARS-CoV-2 Virus in Patients with Duchenne Muscular Dystrophy: A Patient Reported Survey

“…In Saudi Arabia, Bamaga et al advised DMD patients to proceed with virtual clinic visits, if possible, to avoid unnecessary contact with other patients who are probably infected [ 20 ]. In our previous study, we presented the possibilities and benefits of home e-monitoring of the pulmonary function in DMD patients [ 21 ].…”