{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,5]],"date-time":"2026-07-05T15:15:08Z","timestamp":1783264508030,"version":"3.54.6"},"reference-count":47,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2026,6,14]],"date-time":"2026-06-14T00:00:00Z","timestamp":1781395200000},"content-version":"vor","delay-in-days":13,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,6,1]],"date-time":"2026-06-01T00:00:00Z","timestamp":1780272000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/501100001665","name":"Agence Nationale de la Recherche","doi-asserted-by":"publisher","award":["ANR\u201021\u2010RAR4\u20100005"],"award-info":[{"award-number":["ANR\u201021\u2010RAR4\u20100005"]}],"id":[{"id":"10.13039\/501100001665","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2026,6]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Vascular liver diseases (VLDs) predominantly affect young adults and require lifelong monitoring. The health\u2010related quality of life (HRQoL) of patients with VLDs is deteriorated, with high levels of fatigue and depressive symptoms, but their lived experience and unmet needs remain unknown. To fully integrate the patients\u2019 perspective and generate actionable insights, we conducted a qualitative peer\u2010research study.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Twelve peer researchers conducted interviews with patients in France, Spain, Switzerland, and the Netherlands. Analysis proceeded in three phases: individual inductive thematic analysis independently made by peer and academic researchers, followed by an international workshop to build a shared thematic framework. Third, directed content analysis, informed by the shared framework, was made by an academic researcher.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>From 27 interviews, five themes were identified, mapping the disease's impact on quality of life from diagnosis onward, and throughout the patient journey. First, the diagnosis trajectory was characterised by \u2018uncertainty and biographical disruption\u2019. Then, long\u2010term symptoms were described as impacting daily life through the experience of \u2018chronic uncertainty, loss of ability and social exclusion\u2019. Participants\u2019 accounts also reflected the social impact of VLDs, which resulted in \u2018renegotiating roles, ties and identities\u2019. All along the care journey, their healthcare experience could be marked by \u2018relational and institutional gaps shaping illness experience\u2019. Finally, \u2018the sense of belonging to a community of peers\u2019 was highlighted as a potential but lacking resource.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Living with a rare VLD involves uncertainty, unpredictable fatigue, stigma, and social disruption, alongside efforts to maintain dignity and autonomy. While patients can demonstrate resilience, this does not negate ongoing needs. Improving quality of life requires addressing not only symptoms such as fatigue, anxiety or sexual dysfunction but requires guidance on physical activity, nutrition or occupational and financial challenges.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient and Public Contribution<\/jats:title>\n                    <jats:p>Ten patients and two caregivers were involved as peer researchers throughout the study, ensuring that priorities, interpretations, and conclusions reflected patient\u2010defined concerns. All peer researchers contributed to the design, data collection and analysis activities. Due to professional and health constraints, about half of the PRs could only participate in the first local analysis phase. PRs were financially compensated.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70721","type":"journal-article","created":{"date-parts":[[2026,6,14]],"date-time":"2026-06-14T07:42:56Z","timestamp":1781422976000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["For Me, Quality of Life Is When I Get Through the Day Without Thinking: I Won't Make It: A Participatory Qualitative Study of Health\u2010Related Quality of Life in Rare Liver Diseases"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8930-653X","authenticated-orcid":false,"given":"Anouck","family":"Alary","sequence":"first","affiliation":[{"name":"INSERM, Aix\u2010Marseille Univ, IRD, ISSPAM, SESSTIM (Economic and Social Sciences of Health and Medical Information Processing), CALIPSO team Marseille 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