LIVES
Quality of life of patients living with vascular LIVEr diseaseS - Developing research on the social impact of rare diseases
Our main objective is to develop a questionnaire highlighting the social impact of rare diseases, which will be first proposed to patients living with vascular liver diseases.
Our secondary objective is to comprehensively assess the quality of life of patients with vascular liver diseases and their unmet needs, with the help of participatory methods.
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Project period
-
Main investigator
Agnès Dumas
SESSTIM member(s) of the project:
Sponsors:
The LIVES project has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575, from the ANR (French National Research Agency), the SNF (Swiss National Science Foundation)”, the Instituto de Salud Carlos III, and the FWO (Fonds Wetenschappelijk Onderzoek – Vlaanderen).
Partners:
ECEVE (UMR 1123 Inserm, Univ Paris Cité), AP-HP (Assistance Publique – Hôpitaux de Paris, SUPSI (Scuola universitaria professionale della Svizzera italiana, USI (Università Della Svizzera Italiana, FISABIO (Fundacion para el fomento de la investigacion sanitaria y biomedica de la comunitat valenciana), FRCB-IDIBAPS (Fundacio de recerca clinic barcelona-institut d'investigacions biomediques august pi i sunyer), VUB (Vrije Universiteit Brussel), Stichting Hogeschool Rotterdam, UCL (Université catholique de Louvain, HES-SO Genève, Centre Hospitalier Universitaire de Tours
Project website:
http://www.livesproject.eu/
Research topics:
Research question:
More and more attention is being paid to the Quality of life of patients with chronic complex conditions, including rare diseases. As progress in therapeutics has resulted in increased life expectancy, the number of people living into adulthood with a rare disease has increased.
Method:
The project gathers researchers from a variety of disciplines applied to health (sociology, psychology, demography, epidemiology, public health), clinicians, and representatives of patients.
It is organized into two parts:
- A Quantitative study: A questionnaire will be designed to assess the quality of life of patients living with a rare disease. It will be proposed to patients living with a vascular liver disease followed up in three European countries (France, Spain, and Switzerland).
- A qualitative study: In-depth interviews will be conducted with patients living with vascular liver disease in order to understand their unmet needs in four European countries (France, Spain, Switzerland, the Netherlands). This study will be a "peer-research" study: the interviews will be conducted and analyzed by peer researchers, who are patients or caregivers, with the help of qualitative research experts from Academia.
Research prospects:
The project is expected to have several impacts:
- Develop research on the social aspects of quality of life for patients living with a rare disease;
- Provide data for advocacy and national disease care plans;
- Design appropriate interventions for patients with vascular liver diseases and;
- Improve knowledge on the effects of patient and public involvement.
Results:
The results of the project are routinely given on the website of the study: http://www.livesproject.eu/#
All the publications issued from the project will be made accessible to the public ("open access").
