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June 17, 2026Health ExpectationsOpen Access

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‐Related Quality of Life in Rare Liver Diseases

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Authors

AAAnouck AlaryInsermJSJane SattoeRotterdam University of Applied SciencesLSLynda SiferInserm

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Overview

Qualitative study explores health-related quality of life in young adults with vascular liver diseases, suggesting urgent needs for support.

Key Points

  • To understand the health-related quality of life and lived experiences of patients with vascular liver diseases.
  • Conducted interviews with 27 patients across France, Spain, Switzerland, and the Netherlands.
  • Used individual inductive thematic analysis by peer and academic researchers.
  • Performed directed content analysis based on a shared thematic framework.
  • Identified five themes relating to patients' quality of life through the disease journey.
  • Highlighted issues such as chronic uncertainty, loss of ability, and social exclusion.
  • Emphasized the need for guidance on physical activity, nutrition, and overcoming stigma.

Cite This Study

Alary et al. (2026) studied this question.

synapsesocial.com/papers/6a32398fd50b63ecad204f8ahttps://doi.org/10.1111/hex.70721
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1Fatigue, depression, and impaired health-related quality of life in patients with vascular liver diseases: A multicentric European study2026
  2. 2Fatigue, depression, and impaired health-related quality of life in patients with vascular liver diseases: a multicentric European study.2026
  3. 3Challenges in the care of rare vascular liver diseases: Insights from patients, health care providers, and patient organizations2026
  4. 4The impact of lipoprotein lipase deficiency on health-related quality of life: a detailed, structured, qualitative study2017 · 20 citations
  5. 5Health-related Quality of Life in Pulmonary Arterial Hypertension2010 · 16 citations