Study on Improved Patient Recruitment and Follow-up for Pseudoxanthoma Elasticum PXE at Angers University Hospital Using Age-Adapted and Symptom-Based Care Paths Including Teleconsultations

What this Trial Is About

Pseudoxanthoma elasticum PXE is a rare genetic disorder causing abnormal calcium deposits in the skin, eyes, and arteries, leading to symptoms like skin lesions, intermittent leg pain, strokes, retinal bleeding, and vision loss. These symptoms usually appear and worsen slowly over a lifetime, mainly affecting adults in later life, and have a significant impact on daily functioning. The study aims to evaluate a new way to recruit and follow PXE patients, adapting care paths to different patient profiles and including teleconsultations to improve patient monitoring and satisfaction. The study uses a before-and-after design with three periods over six years Period A1-2 continues current recruitment and care methods to collect baseline data Period A3-4 is a two-year transition implementing new alternating care pathways Period A5-6 evaluates these new pathways when fully operational. The alternating pathways are tailored to patient age and symptoms and include multidisciplinary teleconsultations. Patients will be monitored through questionnaires and interviews to assess the impact of these changes. Participants will be PXE patients treated at the reference center who meet specific diagnostic criteria. Researchers will analyze overall patient follow-up data before and after the new system, including quality of life, satisfaction, and confidence questionnaires, plus interviews with patients, relatives, and doctors. The main measure is the number of patients properly followed up under the new care model, with ongoing data collection over the study periods to compare outcomes and optimize care.

Impact of Optimized Recruitment and Follow-up of Patients With Pseudoxanthoma Elasticum (PXE)