Experiences of pregnancy and family planning in patients with antiphospholipid antibodies and antiphospholipid syndrome

Background Women with antiphospholipid antibodies (aPL) and antiphospholipid syndrome (APS) are at increased risk of pregnancy complications. Routinely reported endpoints primarily captures what happens medically but provide limited insight into the experience of the emotional, psychosocial and lived burden of pregnancy planning and pregnancy after loss with aPL/APS. Understanding these aspects is important for patient-centered counselling, supporting adherence and wellbeing and designing future patient-centered care. Objectives To explore how women with aPL/APS experience family planning, pregnancy and pregnancy care including interactions with healthcare professionals and, how living with aPL/APS affects their psychological wellbeing and quality of life. Methods We conducted a scoping review of medical and psychology databases to identify qualitative studies and mixed-methods studies with extractable qualitative data. We conducted a thematic analysis to synthesize findings into overarching themes. Results We included six studies (114 women) across four countries. Six overarching themes were identified:1) Regaining control under perceived high risk; 2) reconfiguring family planning in light of APS; 3) living with chronic uncertainty, grief and last-chance pregnancy; 4) social and relational influences on reproductive decision-making; 5) gaps in recognition, information and monitoring and 6) the value of empathic, coordinated, multidisciplinary preconception care. Overall, women’s experiences were shaped by reproductive risk, prior pregnancy loss, treatment burden, uncertainty and the quality and continuity of communication with health-care professionals. Conclusion Women with aPL and APS are at increased risk of adverse pregnancy outcomes. While conventional clinical endpoints typically describe medical outcomes, they may provide limited insights into the emotional, psychosocial and lived burden of pregnancy planning and pregnancy. Understanding these dimensions is important for patient-centered counselling, adherence, wellbeing and the development of future care.