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Background <p>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.</p> Objective <p>To describe current practices, perspectives, and challenges faced by patients and healthcare professionals in the management of pregnancy in women with rare vascular diseases.</p> Methods <p>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.</p> Results <p>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.</p> Conclusions <p>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.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年6月27日

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  • Gloria Somalo-Barranco,
  • Alexandra Benachi,
  • Laurence M. Boon,
  • Petra Borgards,
  • Janine Dickinson,
  • Freya Droege,
  • Olivier Dupuis,
  • Michael Frank,
  • Guillaume Jondeau,
  • Robert M. Kauling,
  • Diana Marinello,
  • Edit Nagy,
  • Jolien W. Roos-Hesselink,
  • Meike Rybczynski,
  • Pernille Mathiesen Torring,
  • Carine van der Vleuten,
  • Aline Verstraeten,
  • Liesbeth Wildero Van Wouwe,
  • Dina Zucchi,
  • Julie De Backer

摘要

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.