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.
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
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