Educational Needs in Self-Care Apps for Mast Cell Activation Syndrome: Perspectives from Specialists

Abstract

Mast Cell Activation Syndrome (MCAS) is a condition that requires careful lifelong self-care. Mobile health apps are promising tools, but their content must be tailored to patient needs. This study aimed to identify and prioritize educational needs for designing a self-care mobile app for MCAS patients from the perspective of specialists. An applied, cross-sectional study was conducted using a descriptive survey. A purposive sample of 18 clinical immunologists and allergists completed a validated, researcher-developed questionnaire. They rated the importance of 58 educational items across 10 domains on a 5-point Likert scale. Data were analyzed using descriptive statistics. Fifty-two out of 58 items were considered essential (mean score ≥3.0), with the highest priority given to practical knowledge, such as proper use of an epinephrine auto-injector and trigger identification. Six items, including detailed breathing techniques and specific exercise types, did not meet the essentiality threshold. Additionally, specialists approved additional application features, such as a patient medical history section and a user feedback mechanism. This study provided an expert-validated foundation of essential educational content for an MCAS self-care app. The results offer an important blueprint for creating a targeted mHealth tool to empower patients, improve self-care, and enhance quality of life.