Experiences of systemic sclerosis patients with home monitoring of their pulmonary function: a qualitative study

Objective To evaluate the experiences, perceived benefits and disadvantages of home monitoring of pulmonary function in SSc patients with interstitial lung disease (ILD).Methods Semistructured interviews were conducted among SSc-ILD patients who used the home monitoring application of pulmonary function for at least 3 months. In our program, patients are instructed to perform home spirometry weekly at fixed time points using a mobile application with results being directly visible for patients and physicians. Audiotapes of the interviews were transcribed verbatim and analysed using inductive thematic analysis after performing a member check.Results A total of 13 patients were interviewed, with a median age of 58 years (range 36-75) and a median experience with home monitoring of 12 months (range 3-12). We identified four major themes, including routine of telemonitoring, impact of telemonitoring, trust in telemonitoring and implementation in regular healthcare. Overall, patients found performing home spirometry to be feasible. Major perceived benefits of performing home spirometry are an increase in patient empowerment, better understanding of the disease course and a reduction in hospital visits, whereas identified disadvantages are an emotional burden of telemonitoring, heightened awareness of illness, doubts about its validity and the need for digital competencies. All patients expressed their willingness to continue, although some patients emphasized the need for face-to-face visits.Conclusion Telemonitoring of pulmonary function is accepted by SSc-ILD patients with the perceived benefits outweighing the disadvantages. Adopting a patient-centred strategy that considers individual factors and addresses concerns proactively is warranted to successfully implement home spirometry. What does this mean for patients?In patients with systemic sclerosis (SSc), lung scarring (called pulmonary fibrosis) is an important organ complication that leads to reduced quality of life. It is the most frequent cause of SSc-related death. A group of experts in Europe recommend initiating treatment in patients with severe or progressing pulmonary fibrosis. Currently, it is difficult to measure lung function regularly to detect progressive disease, as there is variability in measurements and the course of the disease is unpredictable. Based on previous research, we predicted that measuring lung function at home might be an effective way to detect worsening lung function in a timely manner. Before implementing home lung function tests in regular healthcare, it is important to understand patients' views. Therefore, we evaluated the experiences of patients with SSc who have measured their lung function at home. We showed that, in general, patients find it acceptable to perform lung function tests at home, but that it might be accompanied by emotional burden. Adopting a patient-centred strategy that considers individual factors and addresses concerns in a proactive way is needed for successful implementation.