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

What this Trial Is About

This research aims to evaluate whether adding early nurse-led and psychological support after receiving a diagnosis of retinitis pigmentosa (RP), a rare progressive eye disease, can improve patient experience and emotional well-being. The study focuses on adults newly diagnosed with RP, recognizing that diagnosis can be emotionally challenging due to the disease's progressive nature and the difficulty in obtaining a diagnosis. The study compares usual care with an enhanced support pathway to see if structured support reduces anxiety and depression while improving satisfaction. Participants will be randomly assigned to one of two groups. The enhanced care group will receive early nurse consultations at 15 days and 6 months after diagnosis, along with psychological follow-up at 6 months. The usual care group will receive standard ophthalmologist consultations, with psychologist consultations available optionally. The study includes repeated assessments using the Hospital Anxiety and Depression Scale (HADS) to monitor psychological impact. The primary outcome is patient satisfaction at 12 months, measured by a Patient Reported Experience Measure (PREM). During the 12-month study period, participants will be followed with scheduled nurse visits and psychological assessments. Researchers will collect data on patient satisfaction, anxiety, and depression at 15 days, 6 months, and 12 months after diagnosis. The study also gathers feedback from nursing staff about the feasibility and experience of providing the enhanced support. Findings aim to guide better multidisciplinary care models for rare eye diseases like RP.

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