ArticleOrphanet journal of rare diseases2026
Management of pregnancy in women with rare multisystemic vascular diseases: a qualitative survey analysis.
Article in Orphanet journal of rare diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundPregnancy 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.
objectiveTo describe current practices, perspectives, and challenges faced by patients and healthcare professionals in the management of pregnancy in women with rare vascular diseases.
methodsA 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.
results36 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.
conclusionsThis 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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