Postpartum well-being in hemophilia carriers and women with von Willebrand disease: insights from patient-reported outcome measures

Abstract

Background: Hemophilia carriers (HCs) and women with von Willebrand disease (VWD) receive specialized obstetric care because of a higher chance for postpartum bleeding and potential bleeding in the neonates. It is unknown what their postpartum quality of life (QoL), childbirth satisfaction, and experience are and how this differs from the general population. Objectives: This study assessed QoL, childbirth satisfaction and experience in HCs and women with VWD at week 1 and 6 postpartum. These outcomes are compared with those from retrospective studies of the general population. Methods: Participants completed 3 patient-reported outcome measures postpartum: the Short Form-36 at week 1 and 6 measuring QoL, the Mackey Childbirth Satisfaction Rate Scale at week 1 for childbirth satisfaction, and the Labor and Delivery Index at week 6 for childbirth experience. Descriptive statistics were used. Results: In total, 85 HCs and 81 women with VWD completed ≥1 questionnaire. Pain and physical functioning improved over time (both moderate to fairly well; P < .001). Six weeks postpartum, QoL was lower in both groups than those in the general population. Over 88% of both cohorts reported “at least satisfied” on the Mackey Childbirth Satisfaction Rate Scale, significantly higher than the general population (>61%; P < .001). Mean Labor and Delivery Index scores (1.3-1.9 points) indicated an adequate childbirth experience. HCs reported more child-related worries than the general population (37.3% vs 72.2%; P < .001). Conclusion: HCs and women with VWD recover less between week 1 and 6 postpartum than the general population. HCs report more worries about their child during childbirth than women with VWD and the general population.