What question did this study set out to answer?

To identify challenges in the care of patients with rare vascular liver diseases across multiple European countries.

August 12, 2026Open Access

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

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Qualitative study identifies healthcare challenges for rare vascular liver diseases, suggesting improved communication and coordination strategies.

To identify challenges in the care of patients with rare vascular liver diseases across multiple European countries.
Semi-structured interviews with patients, patient advocacy organizations, and health care providers across France, Spain, Switzerland, and the Netherlands.
Thematic framework analysis to identify and synthesize national themes into international insights.
Diagnostic wandering was common, linked to insufficient imaging requests and limited expertise.
Complexity of the disease made diagnosis and communication difficult for both health care providers and patients.
Inadequate supportive care, particularly for mental health and fatigue, was noted, with the need for tailored approaches in reproductive health.

Guilabert et al. (2026) studied this question.

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August 12, 2026Open Access

View Full Paper

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Authors

Qualitative study identifies healthcare challenges for rare vascular liver diseases, suggesting improved communication and coordination strategies.

To identify challenges in the care of patients with rare vascular liver diseases across multiple European countries.
Semi-structured interviews with patients, patient advocacy organizations, and health care providers across France, Spain, Switzerland, and the Netherlands.
Thematic framework analysis to identify and synthesize national themes into international insights.
Diagnostic wandering was common, linked to insufficient imaging requests and limited expertise.
Complexity of the disease made diagnosis and communication difficult for both health care providers and patients.
Inadequate supportive care, particularly for mental health and fatigue, was noted, with the need for tailored approaches in reproductive health.

Guilabert et al. (2026) studied this question.

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