Lupus & antiphospholipid syndrome
A qualitative investigation of the experiences of patients living with antiphospholipid antibodies
Authors' conclusion
Patients highlighted how the diverse manifestations of aPLs/APS, accentuated by management-related challenges, impose considerable physical and psychosocial burdens.
Study context
- Population
- Patients aged ≥18 years with antiphospholipid syndrome (APS) (Revised Sapporo criteria) or ≥1 positive aPL on ≥2 occasions, Canadian multidisciplinary APS clinic95.2% female
- Participants
- 21 patients
- Outcome
- Patient experiences of aPL/APS diagnosis, daily life, and healthcare and treatment
Methodological detailssemi-structured in-depth interviews, thematic analysis, single-centre, Interviews conducted virtually and transcribed verbatim
- Semi-structured in-depth interviews
- Thematic analysis
- Single-centre
- Interviews conducted virtually and transcribed verbatim
Main finding
As reported in the abstract
- Around diagnosis: medical complications/physical symptoms and healthcare, lifestyle and emotional impacts
- Daily life: physical and psychosocial impacts, modified leisure activities, altered employment trajectories, positive and negative impacts on relationships
- Family planning: miscarriage, other pregnancy complications, medication-related challenges (e.g., LMWH injections)
- Healthcare and treatment: lifestyle, physical and emotional burden of medication use; lack of resources but trust in healthcare providers
- Resource needs: more medication-related information, examples to contextualize management behaviours, information for aPLs/APS without SLE
- Mean (SD) age 45.6 (15.0) years; 71.4% had APS; 71.4% had aPLs/APS with SLE
Original publication
A qualitative investigation of the experiences of patients living with antiphospholipid antibodies. Lupus. Published 24 July 2024. doi:10.
Composed by AI from the published abstract and checked against it. How Briefs are made →