Challenges in the care of rare vascular liver diseases: Insights from patients, health care providers, and patient organizations
Abstract
BACKGROUND: Patients with rare vascular liver diseases (VLDs), including non-cirrhotic portal vein thrombosis and Budd-Chiari syndrome, may develop severe complications from an early age. Yet, little is known about their healthcare experience and unmet needs. This study aimed to identify key challenges in the care of these patients across 4 European countries. METHODS: Semi-structured interviews were conducted with patients, members of patient advocacy organizations (PAOs), and health care providers (HCPs) from France, Spain, Switzerland, and the Netherlands. A standardized interview guide explored challenges and unmet needs in healthcare. Using thematic framework analysis, themes were first identified nationally, then synthesized internationally. RESULTS: Thirty-seven individuals participated: 13 patients, 7 PAO representatives, and 17 HCPs. Across countries, VLDs were seen as difficult to diagnose, communicate, and manage, given the uncertainty about their etiology, progression, and treatment. Four core challenges were identified: (1) diagnostic wandering, sometimes due to insufficiently targeted imaging requests and limited radiologic experience; (2) challenges in communicating the diagnosis given the complexity and severity of the disease; (3) scientific uncertainty regarding the etiology, progression, and treatment of VLDs, leading to difficulties for HCPs in risk interpretation and for patients in understanding and managing their condition; (4) challenges in care coordination, particularly for patients with associated diseases or comorbidities. In addition, supportive care, particularly in addressing mental health issues and fatigue, was considered insufficient, and management of reproductive and sexual health was considered to require tailored communication strategies. CONCLUSIONS: This study highlights perceived cross-country challenges in the care of patients with rare VLDs, underscoring the need for targeted interventions in communication and care coordination to improve their healthcare experience and outcomes.
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BibTeX
@article{guilabert2026challenges,
title = {{Challenges in the care of rare vascular liver diseases: Insights from patients, health care providers, and patient organizations}},
author = {Mercedes Guilabert and Agnes Dumas and Eva Gil-Hernández and Lynda Sifer-Rivière and Jane Sattoe and Guenda Bernegger and Maria Caiata Zufferey and María Purificación and Giada Danesi and Virginia Hernandez-Gea and Sarwa Darwish Murad and Pierre-Emmanuel Rautou and Laure Elkrief and Benedetta Terziroli Beretta-Piccoli and Andrea de Gottardi and Annalisa Berzigotti and Aurelie Plessier and José Joaquín Mira},
journal = {Hepatology Communications},
year = {2026},
month = sep,
doi = {10.1097/hc9.0000000000000998},
url = {https://hal.science/hal-05741604v1},
note = {CC BY-NC-ND 4.0},
}
RIS
TY - JOUR
TI - Challenges in the care of rare vascular liver diseases: Insights from patients, health care providers, and patient organizations
AU - Mercedes Guilabert
AU - Agnes Dumas
AU - Eva Gil-Hernández
AU - Lynda Sifer-Rivière
AU - Jane Sattoe
AU - Guenda Bernegger
AU - Maria Caiata Zufferey
AU - María Purificación
AU - Giada Danesi
AU - Virginia Hernandez-Gea
AU - Sarwa Darwish Murad
AU - Pierre-Emmanuel Rautou
AU - Laure Elkrief
AU - Benedetta Terziroli Beretta-Piccoli
AU - Andrea de Gottardi
AU - Annalisa Berzigotti
AU - Aurelie Plessier
AU - José Joaquín Mira
PY - 2026
DA - 2026/09/07
JO - Hepatology Communications
DO - 10.1097/hc9.0000000000000998
UR - https://hal.science/hal-05741604v1
AB - BACKGROUND: Patients with rare vascular liver diseases (VLDs), including non-cirrhotic portal vein thrombosis and Budd-Chiari syndrome, may develop severe complications from an early age. Yet, little is known about their healthcare experience and unmet needs. This study aimed to identify key challenges in the care of these patients across 4 European countries. METHODS: Semi-structured interviews were conducted with patients, members of patient advocacy organizations (PAOs), and health care providers (HCPs) from France, Spain, Switzerland, and the Netherlands. A standardized interview guide explored challenges and unmet needs in healthcare. Using thematic framework analysis, themes were first identified nationally, then synthesized internationally. RESULTS: Thirty-seven individuals participated: 13 patients, 7 PAO representatives, and 17 HCPs. Across countries, VLDs were seen as difficult to diagnose, communicate, and manage, given the uncertainty about their etiology, progression, and treatment. Four core challenges were identified: (1) diagnostic wandering, sometimes due to insufficiently targeted imaging requests and limited radiologic experience; (2) challenges in communicating the diagnosis given the complexity and severity of the disease; (3) scientific uncertainty regarding the etiology, progression, and treatment of VLDs, leading to difficulties for HCPs in risk interpretation and for patients in understanding and managing their condition; (4) challenges in care coordination, particularly for patients with associated diseases or comorbidities. In addition, supportive care, particularly in addressing mental health issues and fatigue, was considered insufficient, and management of reproductive and sexual health was considered to require tailored communication strategies. CONCLUSIONS: This study highlights perceived cross-country challenges in the care of patients with rare VLDs, underscoring the need for targeted interventions in communication and care coordination to improve their healthcare experience and outcomes.
SN - 2471-254X
SN - 2471-254X
ER -