RITA-quali

Understanding the quality of life of people living with PortoSinusoidal Vascular Disease (PSVD)

The RITA-QUALI study aims to evaluate the quality of life of patients diagnosed with portosinusoidal vascular disease (PSVD) in an exploratory and qualitative way.

Project period
-
Main investigator

Agnès Dumas

SESSTIM member(s) of the project:
Agnès DUMAS, Anouck ALARY, Carlotta MAGNANI, Alix BOIROT
Non-SESSTIM member(s) of the project

Pierre-Emmanuel RAUTOU, Virginia HERNANDEZ-GEA, Alberto ZANETTO

Sponsors:

The RiTA (PortoSinusoidal Vascular Disease: Risk stratification & Therapeutic Approaches) has received funding from (French National Research Agency (ANR), National Institute of Health Carlos III (ISCIII), Chief Scientist office, Ministry of Health (CSO MOH), German Federal Ministry for Education and Research (BMBF) and Fondazione Telethon (FTELE)) partners of the EJP RD. The EJP RD initiative has received funding from the European Union's Horizon 2020 research and innovation programme under grant agreement N°825575.

Partners:

AP-HP (Assistance Publique – Hôpitaux de Paris, FRCB-IDIBAPS (Fundacio de recerca clinic barcelona-institut d'investigacions biomediques august pi i sunyer), University of Padova (UPadova), Multivisceral Transplant Unit, Department of Surgery Oncology and Gastroenterology.

Research topics:
Research question:

According to clinical observations, people living with PSVD have a reduced quality of life, but no study has ever been carried out to assess this. RITA-quali is the first stage of a European project to assess the quality of life of patients in three countries (France, Spain and Italy).

Method:

Twenty in-depth interviews will be carried out with patients living in three countries (France, Spain and Italy) by a researcher in the humanities and social sciences.

Research prospects:

The results of this study will be used to create questionnaires that will be useful in other studies carried out on large samples of patients, and ultimately may be used in clinical research evaluating new treatments for PSVD.

Results:

The fully anonymised results of the study will be published in scientific journals and made available to participants on the SESSTIM website or on HAL (French open science archive).

This study received a favourable opinion from the Aix Marseille University Ethics Evaluation (number 2024-010-10-05) on 10 October 2024.