Quality of life of patients living with vascular LIVEr diseaseS Developing research on the social impact of rare diseases


from 01/09/2022 until 30/08/2025

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. Yet, data on the quality of life of patients living with rare diseases are still scarce and focus on disease-related variables, failing to incorporate the social and subjective dimensions of quality of life.

For instance, patients with rare diseases face common problems such as diagnosis wandering, complex health care needs, uncertain prognosis, and side effects of treatments, with an overall impact on their work or personal life, especially when they are still young and professionally active. Yet, this social impact of rare diseases is poorly addressed in the scientific literature dealing with “quality of life” although it is critical in understanding the social inequalities generated by diseases (difficulty to study, to work, to obtain loans, …).

Furthermore, quantitative studies on quality of life of patients do not necessarily reflect patients’ subjective perceptions of health and wellbeing and do not consider the social context in which patients are embedded, or the shortcomings of the healthcare system. Qualitative methods, and moreover, participatory qualitative methods can help to address these issues and help in the design of appropriate supportive programs.

People living with Vascular liver diseases, who are mainly young and active patients, share these difficulties but no study has been published on their quality of life. By starting with studying the quality of life of patients living with vascular liver diseases, the aim of the project is to develop the research on the social impact of rare diseases and to develop patient and public involvement in the making of qualitative research with and by patients.



About funding

Funding bodies: European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575

Created Nov. 22, 2023, 10:42 a.m.

Updated March 18, 2024, 4:10 p.m.

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