Feasibility of a Comprehensive Home Monitoring Program for Sarcoidosis

Abstract

Sarcoidosis is a chronic, heterogeneous disease which most commonly affects the lungs. Currently, evidence-based and individually tailored treatment options in sarcoidosis are lacking. We aimed to evaluate patient experiences with a home monitoring program for sarcoidosis and assess whether home monitoring is a feasible tool to enhance personalized treatment. Outpatients with pulmonary sarcoidosis tested the home monitoring program “Sarconline” for one month. This is a secured personal platform which consists of online patient-reported outcomes, real-time wireless home spirometry, an activity tracker, an information library, and an eContact option. Patients wore an activity tracker, performed daily home spirometry, and completed patient-reported outcomes at baseline and after one month. Patient experiences were evaluated during a phone interview. Ten patients were included in the study. Experiences with the home monitoring program were positive; 90% of patients considered the application easy to use, none of the patients found daily measurements burdensome, and all patients wished to continue the home monitoring program after the study. Mean adherence to daily spirometry and activity tracking was, respectively, 94.6% and 91.3%. In conclusion, a comprehensive home monitoring program for sarcoidosis is feasible and can be used in future research and clinical practice.

Ranking Self-reported Gastrointestinal Side Effects of Pharmacotherapy in Sarcoidosis

“…The drugs currently used to treat various manifestations of sarcoidosis tend to cause side effects, including gastrointestinal side effects, which then further increase the burden of this disease [1]. Since the importance of patient participation in healthcare decisions has been increasingly acknowledged [18], and studies from a patient perspective are important [19], we conducted an online survey of selfreported gastrointestinal side effects.…”

Comprehensive Care for Patients with Sarcoidosis

“…To achieve skills for self-management, patients and families need to be adequately trained and supported by their healthcare providers [1]. Use of novel eHealth solutions to enhance self-management has recently gained interest in sarcoidosis [45,51]. Self-monitoring of symptoms, side-effects, QoL, activity and pulmonary function at home has shown to be feasible and highly appreciated by patients with sarcoidosis [51,52].…”

“…Use of novel eHealth solutions to enhance self-management has recently gained interest in sarcoidosis [45,51]. Self-monitoring of symptoms, side-effects, QoL, activity and pulmonary function at home has shown to be feasible and highly appreciated by patients with sarcoidosis [51,52]. A comprehensive home monitoring program may provide patients with more insights in their disease course, and thereby empower patients and enhance communication with healthcare providers.…”

Health-Related Quality of Life in Sarcoidosis

“…57,58,117 Additionally, assessing HRQoL in sarcoidosis presents a unique challenge because successful antigranuloma treatment is not always associated with improved HRQoL. 5,30,46,47,57,118 Sarcoidosis-specific PROMs have been developed to address these shortcomings and include the SHQ, 35,68,72,73,107,[118][119][120][121][122] Kings Sarcoidosis Questionnaire (KSQ), 92,[123][124][125][126][127] and the Sarcoidosis Assessment Tool (SAT) 93,118 (►Table 3).…”

“…A small feasibility study evaluating the possibility of a comprehensive home monitoring program for patients with sarcoidosis utilizing a sarcoid online tool that incorporated the KSQ found that all the patients completed the questionnaire easily, and did not find the process burdensome. 126 This may prove to be useful to increase patient participation in medical decision making and may reduce the frequency of physician visits for patients. A recent multinational initiative, evaluating the feasibility of a set of the best standardized practice outcome measures for patients with sarcoidosis, has proposed that the KSQ and Fatigue Assessment Score (vide infra) be used as the standard PROMs for assessing HRQoL in patients with pulmonary sarcoidosis.…”