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

Acronimo LIVES

Abstract LIVES is a European research project funded under the EJP RD (European Joint Programme Rare Diseases) and the SNSF for the Swiss partners. Literature on quality of life (QoL) in rare diseases usually focuses on disease-related variables, keeping a biomedical model that fails to incorporate the social and the subjective dimensions of QoL. The objective of the LIVES project is to investigate the impact of rare diseases on QoL by a) developing an instrument emphasizing the social impact of diseases and b) assessing QoL comprehensively, using participatory methods. LIVES is based in the setting of vascular liver diseases (VLD) and seeks to be transferable to other diseases. It follows a mixed methods design and includes a quantitative and a qualitative study.

Enti SUPSI coinvolti Centro competenze pratiche e politiche sanitarie

Persone coinvolte Guenda Bernegger, Gaël Brulé

Responsabili Maria Caiata Zufferey

Data di inizio progetto 1 agosto 2022

Data di chiusura progetto 31 luglio 2025