Prospective cohort study of eDiary acute pain assessments in sickle cell disease during third trimester and...

Pregnant women with sickle cell disease (SCD) are at higher risk of SCD-related morbidity and mortality than after pregnancy. Existing data from health care use suggest increased acute vaso-occlusive pain events during pregnancy, particularly in the third 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, to our knowledge, 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 electronic diary (eDiary) mobile application, we tested the primary hypothesis that self-reported acute SCD pain events during pregnancy (third 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 at ≤16 weeks gestation to participate in the prospective study; 40 of 42 (95.2%) 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 than after pregnancy (0.74 vs 0.40 events per person-month; P < .001). Based on the eDiary mobile application, we demonstrated a higher rate of self-reported acute SCD pain during pregnancy than after pregnancy. Preconception counseling for women with SCD should address the expected increase above their baseline in acute vaso-occlusive pain events, particularly in the third trimester and puerperium.