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Caregiver Impact: von Willebrand Disease

Study examines the effect on quality of life for parents of children who have the rare bleeding disorder.

Father holds a young child's hand

Like any chronic disease, von Willebrand disease can take a toll on patients, but what about the caregivers?

This was the question asked by Anna Olsson and Linda Myrin Westesson, researchers at the Sahlgrenska University Hospital in Sweden. The National Bleeding Disorders Foundation hosted a webinar to discuss the topic, which has received little attention until now.

“We found that little is known about the perceived burden of parents of children with von Willebrand when we looked in the literature and tried to find research,” said Westesson during the webinar.

Patients who have von Willebrand disease (VWD) lack a blood protein that helps blood clot. Without it, patients can experience abnormal and or excessive bleeding episodes for a variety of reasons, including injury, menstruation or surgery. Patients’ lives are impacted by doctor visits and they may miss days of school. Their caregiving parents feel the effects on their psychosocial well-being, the researchers found.

“Managing daily family life with a chronically ill child means that, to some extent, the parents need to be an active part of the treatment. One consequence of a child’s illness is personal suffering for the parent,” Westesson said.

Olsson and Westesson used clinical and sociodemographic data to draw conclusions about the relationship between parental burden and their child’s illness. The child’s age or gender weren’t factors, but here’s what they found: 

  • Parents reported that their child’s VWD affected family life. It dictated which activities their child could do (and not do) and caused financial woes.
  • The burden was more severe if the child had moderate or severe VWD; experienced bleeds; and required preventive treatment.

The researchers hope their findings will contribute to the development of a more structured way of supporting caregivers of von Willebrand patients.

Watch the full webinar hosted by the National Bleeding Disorders Foundation.