VWD, hemophilia carriers may face slower postpartum recovery
Satisfaction with childbirth remained high in Dutch study
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Women with von Willebrand disease (VWD) and hemophilia carriers may have slower recovery in some areas after childbirth, with quality-of-life scores lagging behind those of the general population by six weeks after delivery, according to a study from the Netherlands. Still, most reported high satisfaction with their experience of giving birth.
The study, “Postpartum Well-Being in Hemophilia Carriers and Women With Von Willebrand Disease: Insights from Patient-Reported Outcome Measures,” was published in Research and Practice in Thrombosis and Haemostasis.
Bleeding disorders can complicate childbirth recovery
Both VWD and hemophilia are bleeding disorders in which the blood cannot clot properly, resulting in unusually heavy and prolonged bleeding. In most cases, they are inherited. Some parents, particularly mothers who are hemophilia carriers, may also experience guilt about passing hemophilia on to their children.
These women usually receive specialized care during pregnancy because they have a higher risk of bleeding after birth. In this study, researchers looked at how women with VWD and hemophilia carriers felt after giving birth. Hemophilia carriers have a disease-causing mutation on an X chromosome that can be passed to their children. In this study, the carrier group also included women with hemophilia, which the researchers pooled under the term hemophilia carriers.
They focused on quality of life, or how healthy and well someone feels physically and mentally, satisfaction with childbirth, and the overall childbirth experience. Quality of life was measured at one and six weeks after delivery, childbirth satisfaction at week one, and childbirth experience at week six. The researchers compared these findings with data from the general population.
To do this, women filled out three questionnaires. The Short Form-36 (SF-36) measures quality of life across areas such as energy and emotional health. The Mackey Childbirth Satisfaction Rating Scale (MCSRS) looks at how satisfied women are with their childbirth, with domains that include self, partner, baby, nurse, and physician. The Labor and Delivery Index (LADY-X) looks at the overall experience with giving birth, featuring domains such as information received, emotional support, feeling of security, worries about the child, and first contact with the child.
Quality of life improved but lagged by week six
In total, 81 women with VWD and 85 hemophilia carriers completed at least one questionnaire. The women had a median of two pregnancies, and most had vaginal deliveries. The median number of pregnancies reaching a viable gestational age was zero in hemophilia carriers and one in women with VWD. No cases of blood clots or infections were reported after birth.
In women with VWD, general health measured using the SF-36 remained high at both week one and week six. Pain improved from 52.2 to 71.9 points, and physical functioning from 56.4 to 80 points. Scores for physical role limitations improved from 31.5 to 55.3 points, which means an improvement from bad to moderate. Social functioning, emotional role limitations, vitality, and emotional well-being stayed stable.
In hemophilia carriers, general health was rated very high at week one (80.9 points) and slightly decreased by week six (78.3 points). Pain improved significantly, from 55.8 to 71.1 points. Physical and social functioning also improved, while scores for physical role limitations improved but remained moderate. Other areas, including emotional well-being, stayed stable.
When compared with the general Dutch population, hemophilia carriers initially reported better quality of life in most areas. However, by week six, they had lower scores in several areas, including vitality, or energy levels, social functioning, and role limitations due to physical and emotional health. Women with VWD reported less pain and fewer role limitations due to physical health than the general population at week one, but by week six, they scored lower in all areas except physical functioning.
Childbirth satisfaction remained high in both groups
The average MCSRS score was high in both groups, indicating satisfaction. More than 89% of women with VWD and 88% of hemophilia carriers said they were satisfied or very satisfied with their experience of giving birth. This was significantly higher than in the general-population comparison group.
The overall childbirth experience, measured at six weeks, was rated as adequate in both groups. Most women described their experience as very good across several areas. However, some hemophilia carriers reported concerns, especially related to their baby’s health. “Since their offspring can potentially be affected with hemophilia this finding is not surprising,” the team wrote.
“Comparisons with the general population provide insights into health care areas for improvement, such as possibly slower recovery in the first 6 weeks after birth,” the researchers wrote. Because there is a risk of bleeding, and excess bleeding may result in iron deficiency, the researchers recommended to “pragmatically start iron supplementation in case of suspicion for iron deficiency anemia.”
