Mild-severe hemophilia B impacts relationships of US adults and children with hemophilia B and their families: results from the B-HERO-S study

Susan Cutter; Christine Guelcher; Susan Hunter; Dawn Rotellini; Spencer Dunn; David L Cooper

doi:10.2147/PROM.S214188

Mild-severe hemophilia B impacts relationships of US adults and children with hemophilia B and their families: results from the B-HERO-S study

Patient Relat Outcome Meas. 2019 Aug 16:10:257-266. doi: 10.2147/PROM.S214188. eCollection 2019.

Authors

Susan Cutter¹, Christine Guelcher², Susan Hunter³, Dawn Rotellini⁴, Spencer Dunn⁵, David L Cooper⁶

Affiliations

¹ Penn Comprehensive Hemophilia and Thrombosis Program, Hospital of the University of Pennsylvania, Philadelphia, PA, USA.
² Comprehensive Hemostasis and Thrombosis Program, Children's National Health System, Washington, DC, USA.
³ Hemostasis and Thrombosis Center, University Hospitals Cleveland Medical Center, Cleveland, OH, USA.
⁴ National Hemophilia Foundation, New York, NY, USA.
⁵ Center for Comprehensive Care and Diagnosis of Inherited Bleeding Disorders, Orange, CA, USA.
⁶ Novo Nordisk Inc., Plainsboro, NJ, USA.

Abstract

Background: The B-HERO-S study evaluated the impact of mild to severe hemophilia B on the lives of affected adults and children. Here, we assessed the impact of hemophilia B on relationships.

Methods: US adults with hemophilia B and caregivers of affected children completed separate online surveys that included questions regarding impact of the disease on interpersonal relationships.

Results: Most (88%) of the 299 adults completing the survey had mild to moderate hemophilia B. Of those, 54% were married or in a long-term relationship, and 44% were single. Most adults (87%) reported that hemophilia affected their ability to form close relationships with partners or prospective partners; 35% were very/quite dissatisfied with the support received from a previous partner. Nearly all participants (98%) were very/quite satisfied with the support received from their current partner. Most were very/quite satisfied with the support from family (87%) and friends (96%). Most participants reported a negative reaction or experience as a result of disclosing their hemophilia (friend/colleague/employer, 76%/80%/82%, respectively). Of 150 caregivers of children with mostly mild to moderate hemophilia (74%), 89% were married or in a long-term relationship, and most felt very well/quite supported by their partner (98%) and family (92%). Most felt very/quite satisfied with the support of teachers (94%), children at school (80%), and other adults in regular contact (72%). Most caregivers reported negative experiences telling a friend (76%) or having their child tell a friend (69%) about the child's hemophilia; 43% reported that their child was bullied because of his/her hemophilia.

Conclusion: Although the impact of severe hemophilia on relationships has been reported in HERO and other studies, B-HERO-S suggested that mild to moderate hemophilia B also significantly influences relationships of affected men/women and boys/girls, especially in disclosing their diagnosis, selecting a partner, and feeling bullied by peers/colleagues.

Keywords: caregivers; interpersonal relationships; partners; relationship satisfaction; support.