RECRUITINGINTERVENTIONAL

Implementation and Evaluation of a Post-Diagnostic Announcement Protocol at the CRMR RefeRet, Quinze-Vingts Hospital

Implementation and Evaluation of a Post-diagnostic Announcement Protocol at the CRMR RefeRet of the Quinze-Vingts National Ophthalmology Hospital

About This Trial

This study explores whether adding early nurse-led and psychological support after the diagnosis of retinitis pigmentosa (RP) can improve patient experience and emotional well-being. RP is a rare, progressive eye disease often diagnosed after a long and difficult process, and receiving the diagnosis can be emotionally distressing. Eighty newly diagnosed adults will be randomly assigned to either usual care or an enhanced pathway that includes early follow-up with a nurse, structured emotional monitoring, and a psychologist visit at six months. The study aims to determine if this structured support improves patient satisfaction and reduces anxiety and depression compared with standard care.

Who May Be Eligible (Plain English)

Who May Qualify: - Diagnosed with retinitis pigmentosa (RP) and followed at the Quinze-Vingts Rare Eye Disease Center, with diagnosis made after the project begins - Aged 18 to 65 years - Male or female - French-speaking - Have a phone number - Reside in France Who Should NOT Join This Trial: - Pregnant women - Participants enrolled in a therapeutic clinical trial within the past 12 months - Individuals deprived of liberty by judicial or administrative decision - Adults under legal protection or unable to provide willing to sign a consent form - Individuals with other medical conditions or taking treatments that could interfere with study evaluations Always talk to your doctor about whether this trial is right for you.

Original Eligibility Criteria

View original clinical language

Inclusion Criteria: * Diagnosed with retinitis pigmentosa (RP) and followed at the Quinze-Vingts Rare Eye Disease Center, with diagnosis made after the project begins * Aged 18 to 65 years * Male or female * French-speaking * Have a phone number * Reside in France Exclusion Criteria: * Pregnant women * Participants enrolled in a therapeutic clinical trial within the past 12 months * Individuals deprived of liberty by judicial or administrative decision * Adults under legal protection or unable to provide informed consent * Individuals with other medical conditions or taking treatments that could interfere with study evaluations

Treatments Being Tested

BEHAVIORAL

Enhanced post-diagnostic support

Nurse-led and psychologist consultation

BEHAVIORAL

Usual Care

Standard ophthalmologist consultation with optional psychologist consultation

Locations (1)

Centre Hospitalier National D' Ophtalmologie Des Quinze-Vingts

Paris, Île-de-France Region, France