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August 9, 2026Hepatology CommunicationsOpen Access

Challenges in the care of rare vascular liver diseases: Insights from patients, health care providers, and patient organizations

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Authors

MGMercedes GuilabertADAgnès DumasEGEva Gil-Hernández

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Overview

Qualitative study reveals key healthcare challenges in rare vascular liver diseases, indicating the need for improved communication and care coordination.

Key Points

  • This study aims to identify challenges in the care of patients with rare vascular liver diseases across multiple European countries.
  • Conducted semi-structured interviews with patients, health care providers, and patient advocacy organization representatives in four countries.
  • Utilized a standardized interview guide to explore healthcare challenges and unmet needs.
  • Employed thematic framework analysis to identify and synthesize themes nationally and internationally.
  • Identified four core challenges: diagnostic wandering, communication difficulties, scientific uncertainty, and care coordination issues.
  • Addressed insufficient supportive care for mental health and fatigue management.
  • Highlighted the need for tailored communication strategies regarding reproductive and sexual health.

Cite This Study

Guilabert et al. (2026) studied this question.

synapsesocial.com/papers/6a782d6e2e1896536c8408aehttps://doi.org/10.1097/hc9.0000000000000998
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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 study.2026
  2. 2For 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 Diseases2026 · 1 citations
  3. 3Management of pregnancy in women with rare multisystemic vascular diseases: a qualitative survey analysis2026
  4. 4Rare liver diseases — Etiology, diagnosis and management: A review2025
  5. 5The role of primary care in rare disorders: A qualitative study of parents and patients managing complex vascular anomalies2024 · 1 citations