Evaluation of patients engagement with a digital intervention for daily disease management in pulmonary arterial hypertension
Authors: Mahdavi H , Bacchini Jeanneret G , Aldonza Aguayo R , Escribano Subias P 
Published: November 2023

Abstract

Introduction
Pulmonary arterial hypertension (PAH) is a chronic rare disease with a complex treatment that affects the daily life of patients and requires ongoing monitoring and assessment. In comparison with other chronic diseases, the application of digital health approaches to address patients’ needs in disease self-management has not been comprehensively studied [1], [2]. Within the framework of a clinical study, PAH patients’ engagement level and adherence to using a digital health platform have been studied. The platform allows patients to log health and lifestyle information while also providing structured content for patient education, medication reminders, and lifestyle coaching from a remote HC.

Purpose
The study aimed to measure the impact of the use of the platform on the Health-Related Quality of Life of the patients (HRQoL) and other clinical endpoints (patient’s functional status, signs and symptoms of PAH, patient costs and healthcare resource utilization) and also to assess patients’ engagement and satisfaction with the use of the platform.

Method
53 PAH patients enrolled in a prospective, single cohort, multicentre study [3] from 5 specialized PAH units of reference public Spanish hospitals. The duration of the study was 6 months and to avoid interferences with routine clinical practice, clinical investigation visits matched the clinical guidelines for PAH patients in Spain, which recommend scheduling monitoring visits every 3-6 months. Questionnaires were administered to assess the QoL and satisfaction and for assessing the engagement levels, the app usage data has been analysed.

Results
Regarding the impact of platform usage for 6 months on the HRQoL and clinical endpoints of PAH patients, no statistically significant changes have been observed. However, as per the engagement, patients showed a great interest in using the app and connecting to the Health Coach (HC). More than 45% of patients finished 2 out of 4 levels of the structured educational content, 96.1% of patients used the activity logging feature. Over 79% of patients visited the app monthly and on average, the app was launched 1500 times per month. The communication between the patients and HC was steady during the study, another indication of adherence to the program. As per user experience, the overall outcomes of the questionnaire showed that 84.2% of patients considered that their needs have been met suggesting that the purpose of the program is well addressed. Additionally, 92.1% of patients were satisfied with the program and would use it again. Moreover, 94.7% of patients expressed that they would recommend the program to a PAH patient.

Conclusion
Elevated satisfaction and engagement levels of patients demonstrate that the digital intervention is useful for the patients and supports companionship and knowledge. In this context, the development of digital solutions provides opportunities to ensure continuous PAH patient care and patient empowerment.