Beyond thrombosis: a scoping review of patient-reported outcomes in antiphospholipid syndrome

Antiphospholipid syndrome (APS) is an autoimmune disorder characterized by thrombosis and pregnancy morbidity, with heterogeneous nonthrombotic manifestations that may substantially affect daily functioning and well-being. Patient-reported outcomes (PROs) offer a direct assessment of symptom burden and quality of life but remain underutilized in APS. We performed a scoping review of PubMed from inception through July 2025 using terms related to APS and PROs (quality of life, fatigue, pain, depression, psychological well-being, and health surveys). We included eligible English-language studies that reported PROs in APS. Both qualitative and quantitative studies were included. Twelve cohort studies evaluated PROs in APS. Most studies used legacy instruments such as the 36-item short form health survey. A few recent studies have used patient-reported outcomes measurement information system (PROMIS) tools. Across studies, patients with APS reported impairments in multiple domains of health-related quality of life (HRQOL) as well as overall HRQOL compared with population norms, which are associated with comorbid systemic lupus erythematosus (secondary APS), a history of thrombosis, and greater end-organ damage. Anticoagulation monitoring and international normalized ratio lability contributed to treatment dissatisfaction and reduced HRQOL. Major gaps include the longitudinal assessment of PROs and their temporal relation to clinical events and the evaluation of PROs in obstetric APS and children and older adults with APS. No APS-specific PRO instruments have been developed. There is a need to either develop APS-specific instruments or validate generic instruments such as PROMIS measures in large representative APS cohorts. Incorporating PROs into clinical practice and research can enhance clinical care and facilitate patient-centered, personalized management of APS.