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

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.

Déclaration de conflit d'intérêts

SC has received honoraria from Novo Nordisk and Pfizer. CG reports personal fees from Novo Nordisk, Genentech, Octapharma, the National Hemophilia Foundation, Indiana Hemophilia, and Thrombosis Center outside the submitted work; she is also a Hemophilia Alliance Board member. SH reports personal fees from Novo Nordisk and grants from Cascade Hemophilia Consortium and MCHB, CDC outside the submitted work. DR is an employee of the National Hemophilia Foundation. The National Hemophilia Foundation has received grant funding from Novo Nordisk for the creation of educational workshops: HERO B. SD reports research funding from Bayer. DLC is an employee of Novo Nordisk. The authors report no other conflicts of interest in this work.