RareBox App. Patient-Centered Monitoring System in the Self-management of Rare Diseases

摘要

Mobile health applications (m-health app) allow connecting patients with care professionals more quickly and dynamically. Apps designed for a smartphone allow users to access in-formation and self-monitoring when and where they need it, boosting engagement and satisfaction rates. Starting from the construct of quality of life related to health and according to a biopsychosocial care perspective (ICF approach) [1], the paper presents and discusses research phases of the RareBox project: development, implementation and evaluation of self-monitoring App on quality of life of patients with rare diseases.