Management of pregnancy in women with rare multisystemic vascular diseases: a qualitative survey analysis

BACKGROUND: Pregnancy in women with rare vascular diseases is highly challenging, as it can be associated with significant maternal and foetal risks, requiring complex and multidisciplinary management. Care across countries remains insufficiently characterized, and both patients and healthcare providers across Europe highlight the need for better structures and organization to support this critical and potentially life-threatening phase. OBJECTIVE: To describe current practices, perspectives, and challenges faced by patients and healthcare professionals in the management of pregnancy in women with rare vascular diseases. METHODS: A survey developed by the European Reference Networks (ERN) pregnancy working group was extended with VASCERN-specific questions, resulting in a 13-item questionnaire. The survey was distributed to healthcare providers and patient representatives (ePAGs). Qualitative data from open-ended responses were analysed using an inductive thematic approach. RESULTS: 36 responses were collected from 145 invited VASCERN members, resulting in a 25% response rate and representing 10 European countries. Most respondents were healthcare providers (83%). 17% were patient representatives. Thematic analysis identified five recurring themes, including the need for coordinated and collaborative multidisciplinary approaches, variability in the practices regarding preconception and genetic counselling, limited access to specialised centres for pregnancy monitoring, and the importance of structured delivery planning and postnatal follow-up. CONCLUSIONS: This survey clearly shows that there are common concerns about pregnancy in women with rare vascular diseases. Improvement actions mainly involve better education and drawing up multidisciplinary care pathways and guidelines that will lead to better access and organisation of care. Initiatives in this direction have already been taken within VASCERN.

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Publication Details

Journal
Orphanet Journal of Rare Diseases
Published
2026-06-27
DOI
https://doi.org/10.1186/s13023-026-04472-6
Primary Topic
Peripheral Artery Disease Management
Type
article
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article

Management of pregnancy in women with rare multisystemic vascular diseases: a qualitative survey analysis

Jolien W. Roos‐Hesselink, Guillaume Jondeau, Dina Zucchi, J. C. Dickinson et al.
Orphanet Journal of Rare Diseases
Peripheral Artery Disease Management
article

Management of pregnancy in women with rare multisystemic vascular diseases: a qualitative survey analysis

Jolien W. Roos‐Hesselink, Guillaume Jondeau, Dina Zucchi, J. C. Dickinson, Freya Droege, Gloria Somalo-Barranco, Pernille Mathiesen Tørring, Alexandra Benachi, L. Boon, Diana Marinello, Meike Rybczynski, Carine van der Vleuten, Aline Verstraeten, Julie De Backer, Petra Borgards, R M Kauling, Edit Nagy, Liesbeth Wildero Van Wouwe, Olivier Dupuis, Michael Frank
article en

Abstract

BACKGROUND: Pregnancy in women with rare vascular diseases is highly challenging, as it can be associated with significant maternal and foetal risks, requiring complex and multidisciplinary management. Care across countries remains insufficiently characterized, and both patients and healthcare providers across Europe highlight the need for better structures and organization to support this critical and potentially life-threatening phase. OBJECTIVE: To describe current practices, perspectives, and challenges faced by patients and healthcare professionals in the management of pregnancy in women with rare vascular diseases. METHODS: A survey developed by the European Reference Networks (ERN) pregnancy working group was extended with VASCERN-specific questions, resulting in a 13-item questionnaire. The survey was distributed to healthcare providers and patient representatives (ePAGs). Qualitative data from open-ended responses were analysed using an inductive thematic approach. RESULTS: 36 responses were collected from 145 invited VASCERN members, resulting in a 25% response rate and representing 10 European countries. Most respondents were healthcare providers (83%). 17% were patient representatives. Thematic analysis identified five recurring themes, including the need for coordinated and collaborative multidisciplinary approaches, variability in the practices regarding preconception and genetic counselling, limited access to specialised centres for pregnancy monitoring, and the importance of structured delivery planning and postnatal follow-up. CONCLUSIONS: This survey clearly shows that there are common concerns about pregnancy in women with rare vascular diseases. Improvement actions mainly involve better education and drawing up multidisciplinary care pathways and guidelines that will lead to better access and organisation of care. Initiatives in this direction have already been taken within VASCERN.

Orphanet Journal of Rare Diseases
Université Claude Bernard Lyon 1 (FR), University of Pisa (IT), Cliniques Universitaires Saint-Luc (BE), Karolinska University Hospital (SE), Radboud University Nijmegen (NL), University of Antwerp (BE), Inserm (FR), Universität Hamburg (DE), Université Paris Cité (FR), Université Paris-Saclay (FR), European Food Information Council (BE), Ghent University Hospital (BE), European Business School Paris (FR), Odense University Hospital (DK), Erasmus MC (NL), European Parliament (BE), Radboud University Medical Center (NL), Ghent University (BE), Assistance Publique – Hôpitaux de Paris (FR), Hospices Civils de Lyon (FR), Antwerp University Hospital (BE), Hôpital Européen Georges-Pompidou (FR), University Medical Center Hamburg-Eppendorf (DE), Hôpital Européen (FR), Quadient (Netherlands) (NL), Dutch Expert Centre for Screening (NL), Ziekenhuis Nij Smellinghe (NL), Essen University Hospital (DE), Paris Cardiovascular Research Center (FR), European Molecular Biology Laboratory (DE), ERN GUARD-Heart (NL), Hôpital Bichat-Claude-Bernard (FR), Azienda Ospedaliera Universitaria Pisana (IT), European Centre for Disease Prevention and Control (SE), University of Duisburg-Essen (DE)
Openalex Percentile: Top 5%
Peripheral Artery Disease Management
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