Lupus & antiphospholipid syndrome

Unmet needs and challenges in the diagnosis and management of antiphospholipid syndrome: a qualitative stakeholder study within the ReCONNET framework

Lupus Sci MedPublished Qualitative study

Authors' conclusion

APS remains underdiagnosed, inconsistently managed and inadequately represented in both policy and education.

Study context

Population
Purposively sampled stakeholders in antiphospholipid syndrome (APS) care across Europe (clinicians of different specialties, researchers, policy professionals, laboratory experts, trialists, nurses, students and trainees), within ReCONNET
Participants
16 interviews
Outcome
Stakeholder-identified gaps in APS care (clinical, systemic and educational/research-related unmet needs)
Methodological detailssemistructured interviews, purposive sampling, thematic analysis, Interviews conducted between February and April 2025
  • Semistructured interviews
  • Purposive sampling
  • Thematic analysis
  • Interviews conducted between February and April 2025

Main finding

As reported in the abstract

Stakeholder-identified unmet needs in APS care
Delayed diagnosis cited as a major barrier
Over 85%
Limitations of current classification criteria in capturing all clinical settings of APS
11
Lack of access to multidisciplinary teams as a barrier to optimal care
75% (12 out of 16)
Warfarin remains mainstay of therapy despite adherence and monitoring challenges
9
Need for integration across national or European APS registries and insufficient integration in rare disease policy frameworks
12
Educational stakeholders noting minimal curricular exposure to APS
100%

Original publication

Unmet needs and challenges in the diagnosis and management of antiphospholipid syndrome: a qualitative stakeholder study within the ReCONNET framework. Lupus Sci Med. Published 9 October 2025. doi:10.1136/lupus-2025-001703

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