Prospective Cohort Study of eDiary Acute Pain Assessments in Sickle Cell Disease During Third Trimester and Postpartum Open Access

• Using an eDiary, SCD women had 1.85x higher acute SCD pain rate in the 3rd trimester and puerperium compared to 6-9 months after childbirth

• In the 3rd trimester and puerperium eDiary use results in 5.29x higher self-reported acute SCD pain rate at home compared to hospitalization

Pregnant women with sickle cell disease (SCD) are at higher risk of SCD-related morbidity and mortality compared to after pregnancy. Existing data from healthcare utilization suggest increased acute vaso-occlusive pain events during pregnancy, particularly in the 3rd trimester and puerperium (6 weeks after childbirth). Many acute vaso-occlusive pain events are managed at home and may not capture the full scope of pregnancy-related morbidity. To date, no studies have examined daily self-reported acute vaso-occlusive pain events during pregnancy and after pregnancy to assess their occurrence at home. Based on self-report using an eDiary mobile application, we tested the primary hypothesis that self-reported acute SCD pain events during pregnancy (3rd trimester to puerperium) are greater than after pregnancy (beginning of 6 to end of 9 months after childbirth).In a tertiary care hospital in Ghana, we approached 42 pregnant women with SCD ≤16 weeks gestation to participate in the prospective study; 95.2% (40/42) of pregnant women with SCD agreed to participate; only 33 participants completed 71.5% of expected eDiary mobile application entries during and after pregnancy. The eDiary data revealed a 1.85-fold higher self-reported acute SCD pain incidence rate during pregnancy compared to after pregnancy (0.74 vs. 0.40 events per person-month; p<0.001).