ArticleLupus science & medicine2025
Unmet needs and challenges in the diagnosis and management of antiphospholipid syndrome: a qualitative stakeholder study within the ReCONNET framework.
Article in Lupus science & medicine, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.
What it found
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Who cites it
2 citing papers in PubMed.
- Integrating Anti-Phosphatidylserine/Prothrombin Antibodies Testing into Antiphospholipid Syndrome Diagnostics: A Multidomain, Expert Perception-Based Health Technology Assessment.Diagnostics (Basel, Switzerland) · 2026Article
- The impact of antinuclear antibodies and complement levels in the prognosis of pregnant women within the antiphospholipid syndrome spectrum.Frontiers in immunology · 2026Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveAntiphospholipid syndrome (APS) is a rare autoimmune condition characterised by thrombosis and/or pregnancy morbidity in the presence of antiphospholipid antibodies. Despite the publication of updated American College of Rheumatology (ACR)/European Alliance of Associations for Rheumatology (EULAR) classification criteria in 2023, persistent diagnostic and therapeutic challenges remain. This qualitative study, conducted within the European Reference Network for Connective Tissue and Musculoskeletal Diseases, ReCONNET, aimed to map stakeholder-identified gaps in APS care across Europe to inform subsequent quantitative prioritisation.
methodsBetween February and April 2025, we conducted 16 semistructured interviews with purposively sampled stakeholders (clinicians across different specialties-rheumatologists, haematologists, obstetricians, neurologists, general practitioners, paediatricians, researchers and translational scientists, health systems and policy professionals, laboratory medicine experts, pharmaceutical trialists, patient and research nurses, medical students and trainees). Transcripts were thematically analysed and categorised into three domains: clinical, systemic and educational/research-related unmet needs.
resultsOver 85% of stakeholders cited delayed diagnosis as a major barrier. Eleven participants highlighted limitations of the current classification criteria in capturing all the clinical settings of APS. 75% (12 out of 16) identified lack of access to multidisciplinary teams as a barrier to optimal care. Nine respondents reported that warfarin remains the mainstay of therapy despite challenges in adherence and monitoring. Twelve stakeholders emphasised the need for integration across national or European APS registries and insufficient integration in rare disease policy frameworks. Gaps in undergraduate and postgraduate education were universally reported, with 100% of educational stakeholders noting minimal curricular exposure to APS.
conclusionAPS remains underdiagnosed, inconsistently managed and inadequately represented in both policy and education. This study identifies quantifiable stakeholder-perceived gaps that will inform the design of Europe-wide standardised, multidisciplinary strategies to improve APS care and research infrastructure within the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases and similar networks.
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