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 article presents the findings of the qualitative study of the LIVES project. With the help of “peer researchers” who were patients or caregivers themselves, the study explored how people living with vascular liver diseases experience their quality of life in everyday life through in-depth interviews with 27 patients from four European countries (France, Spain, Switzerland, and the Netherlands).
Key findings
Participants described living with persistent uncertainty, beginning with diagnosis and continuing throughout their lives. Many explained that fatigue, unpredictable symptoms, and concerns about the future affected their daily activities, work, relationships, and social life. They also reported feeling misunderstood because their disease is rare and often invisible, leading to a lack of recognition from healthcare professionals, employers, or people around them. Many had to adapt their roles and identity while trying to maintain a sense of normality and independence. Participants also highlighted gaps in healthcare, including the need for better information, more coordinated care, and greater attention to the psychological, social, occupational, and financial consequences of the disease. Finally, they emphasized that connecting with other people living with vascular liver diseases could provide valuable support and reduce feelings of isolation.
These findings show that improving quality of life for people living with rare vascular liver diseases requires going beyond the medical management of the disease. Care should also address patients’ emotional, social, and practical needs and involve patients as partners in developing patient-centred care.