“Part of the Ritual”: Exploring Patient and Physician Decision Making Regarding Anticoagulation Use in Obstetric Antiphospholipid Syndrome

INTRODUCTION: Antiphospholipid syndrome is an acquired thrombophilia associated with recurrent pregnancy loss. Treatment with low-molecular-weight heparin (LMWH) and/or aspirin (ASA) during pregnancy to prevent future loss is based on limited trial data with mixed results. Given the clinical equipoise, we sought to understand how patients and physicians navigate the decision-making process for use of antepartum LMWH and/or ASA. This research is needed to inform the feasibility of future research that seeks to resolve the question of treatment efficacy in this patient population.

METHODS: Following constructivist grounded theory (CGT) methodology, we interviewed 10 patients and 10 thrombosis physicians in Ottawa, Canada from January 2017 to March 2018. Patients were drawn from women included in the TIPPS (Thrombophilia in Pregnancy Prophylaxis Study) screening logs and from consecutive women attending a specialty Thrombosis Clinic who met the revised Sapporo/Sydney laboratory criteria and had at least 1 prior late loss or 2 early losses (<10 weeks gestation). Data collection and analysis occurred iteratively, in keeping with CGT methodology.

RESULTS: Our analysis generated three predominant themes, present across both patient and physician interviews, which captured a patient-led decision-making experience: (1) Accepting Uncertainty, (2) Focusing on Safety and (3) Managing High Stakes. Many patients accepted the uncertainty of their situation; they felt hopeful but were also reluctant to expect a better pregnancy outcome. This was echoed in the physician interviews, which emphasized the uncertainty of LMWH/ASA in improving outcomes when counselling patients on their options. Both groups focused on the low-risk nature and safety of these medications. Patients focused on safety to the fetus, with little concern for maternal risk. Finally, patients and physicians acknowledged the high emotional burden and what was at stake: avoiding further pregnancy loss. Patients responded to their situation by taking action (i.e. using LMWH injections became a “ritual”) whereas physicians reacted by removing themselves from the final decision and “[leaving] it up to the patient”.

CONCLUSION: In this setting of clinical equipoise and in the absence of serious safety concerns, decision-making around antepartum LMWH/ASA was largely directed by informed patient choice. These findings should be considered when designing future research on the role for LMWH/ASA in this population, as it suggests that the perceived benefits of treatment go beyond improving pregnancy rates. Rather, patients seem to derive psychological benefit from the process of taking action, even in the absence of a guaranteed good outcome.

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