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Background <p>Persons living with a rare disease (PLWRD) often encounter burdensome and stressful events that may severely affect their psychosocial vulnerability. There is an urgent need for psychosocial support in PLWRD. We aimed to reach consensus about the most prominent psychosocial needs in rare diseases and future research directions to develop adequate psychosocial support for rare diseases.</p> Methods <p>An adapted nominal group technique (NGT) session was conducted in Nijmegen (The Netherlands) with a European expert group of professionals working in the rare disease field. Seventeen participants from seven different European countries took part in the NGT session (seven researchers, two therapists, one patient representative, four clinicians/researchers, and three clinicians), and 23 participants took part in the overall workshop and contributed to this consensus statement.</p> Results <p>An initial list of 57 psychosocial needs was aligned with Pickers’ theoretical framework of eight principles of care: patient-centredness, emotional support, access to care, information and education, partner and family involvement, respect and autonomy, care organisation, continuity of care, and physical comfort. For future research directions, six items remained with main focal points addressing international collaborations, inclusivity in rare diseases (patient representatives, ethnic minorities, and elderly), identifying common needs across rare diseases, and translating psychosocial models from common chronic conditions.</p> Conclusions <p>A consensus meeting was organised that primarily addressed the psychosocial vulnerability in rare diseases. With the outcomes of this study, we aim for better representation of psychosocial vulnerability within health care and to create future research directions to reduce psychosocial vulnerability in rare diseases.</p>

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Addressing psychosocial vulnerability in rare diseases: a call to action from a European expert consensus study

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年10月27日

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  • Rosanne M. Smits,
  • Aukje Aerts,
  • Teodor Angelov,
  • Marissa Bentele,
  • Ivo de Blaauw,
  • Michaela Dellenmark-Blom,
  • Saskia F. A. Duijts,
  • Krister Fjermestad,
  • Monica Franscini,
  • Caterina Grano,
  • Sigrid Hendriks,
  • Laura Inhestern,
  • Thomas Kenny,
  • Charlotte von der Lippe,
  • Loes Oomen,
  • Jan Peter Rake,
  • Andre B. Rietman,
  • Iris A. L. M. van Rooij,
  • Chris M. Verhaak,
  • Nicoline B. M. Voet,
  • Holly Walton,
  • Wendy van Zelst-Stams,
  • Linda Kwakkenbos

摘要

Background

Persons living with a rare disease (PLWRD) often encounter burdensome and stressful events that may severely affect their psychosocial vulnerability. There is an urgent need for psychosocial support in PLWRD. We aimed to reach consensus about the most prominent psychosocial needs in rare diseases and future research directions to develop adequate psychosocial support for rare diseases.

Methods

An adapted nominal group technique (NGT) session was conducted in Nijmegen (The Netherlands) with a European expert group of professionals working in the rare disease field. Seventeen participants from seven different European countries took part in the NGT session (seven researchers, two therapists, one patient representative, four clinicians/researchers, and three clinicians), and 23 participants took part in the overall workshop and contributed to this consensus statement.

Results

An initial list of 57 psychosocial needs was aligned with Pickers’ theoretical framework of eight principles of care: patient-centredness, emotional support, access to care, information and education, partner and family involvement, respect and autonomy, care organisation, continuity of care, and physical comfort. For future research directions, six items remained with main focal points addressing international collaborations, inclusivity in rare diseases (patient representatives, ethnic minorities, and elderly), identifying common needs across rare diseases, and translating psychosocial models from common chronic conditions.

Conclusions

A consensus meeting was organised that primarily addressed the psychosocial vulnerability in rare diseases. With the outcomes of this study, we aim for better representation of psychosocial vulnerability within health care and to create future research directions to reduce psychosocial vulnerability in rare diseases.