Patient journey in cystinosis: focus on non-adherence and disease management.

ABSTRACT:

Background

Few studies have assessed patient-reported experience measures in nephropathic cystinosis. This study uses patient reports focused on the impact of cystinosis, cysteamine treatment-associated problems, and therapeutic adherence and suggests potential actions for improvement.

Methods

In March 2022, six patients with nephropathic cystinosis treated with cysteamine, aged between 12 and 40 years as well as two caregivers, underwent standardized online interviews. Further, in April 2022, two online workshops were organized, each one with the participation of an advisory board consisting of up to four patients and six caregivers. As a result, the first patient journey mapping was developed considering pre-diagnosis, diagnosis and post-diagnosis steps, prescription of tr

SUBMITTER: Ariceta G 

PROVIDER: S-EPMC11610563 | biostudies-literature | 2024

REPOSITORIES: biostudies-literature