Authors: Anouck Alary, Jane Sattoe, Lynda Sifer‐Rivière, Isabelle Aujoula, José Mira, Guenda Bernegger, Giada Danesi, Eva Gil‐Hernández, Pura Ballester, Mercedes Guilabert, Doortje Nipius, Jeanina Kousemaker‐Nieuwdorp, Kay van der Meer‐Kuiper, Stefania Cannavò, Cecile Drossart, Liliane Veniat, María Caiata Zufferey, Agnes Dumas
Journal: Health Expectations • 2026
Overview
This participatory qualitative study presents the findings of the LIVES project, a multicentre European study exploring the impact of rare vascular liver diseases on the health-related quality of life of patients across Europe. By employing peer researchers who are patients or caregivers themselves, the study explores how people living with vascular liver diseases experience quality of life in their everyday lives through in-depth interviews with 27 patients from four European countries (France, Spain, Switzerland, and the Netherlands).
Key findings
People living with rare vascular liver diseases described a diagnostic journey marked by uncertainty and disruption, followed by persistent symptoms, particularly unpredictable fatigue, that affected their daily lives and required constant adaptation. Beyond the physical burden of the disease, participants reported challenges in maintaining family, social, and professional roles, as well as difficulties related to fragmented healthcare, insufficient support, and limited opportunities to connect with peers.
Although many described adapting to life with their condition, these findings highlight that improving quality of life requires addressing not only physical symptoms but also the psychological, social, occupational, and practical challenges associated with living with a rare vascular liver disease.