Impact of mild to severe hemophilia on engagement in recreational activities by US men, women, and children with hemophilia B: The Bridging Hemophilia B Experiences, Results and Opportunities into Solutions (B‐HERO‐S) study

Abstract

The psychosocial impact of hemophilia on activities was recently investigated in the Hemophilia Experiences, Results and Opportunities (HERO) study (675 people with hemophilia and 561 caregivers of children with hemophilia in 10 countries). The impact of hemophilia B may not be accurately reflected in the HERO results, as ~75% of respondents described issues affecting males with hemophilia A. To address the needs of this population, the Bridging Hemophilia B Experiences, Results and Opportunities Into Solutions (B-HERO-S) was developed as a pilot study in the United States in collaboration with the hemophilia community. The analysis reported here assessed engagement in recreational activities and changes to treatment regimens around activities as reported by 299 adults with hemophilia B and 150 caregivers of children with hemophilia B. Nearly all adults with hemophilia B (98%) experienced a negative impact on their participation in recreational activities due to hemophilia-related issues, and most caregivers (90%) reported that hemophilia B had a negative impact on their child's engagement in recreational activities. One of the main reasons identified for discontinuing past activities was the risk of bruising or bleeding (adults/children with hemophilia B, 49%/41%). In particular, adults with hemophilia B reported a history of activity-related bleeding, and most adults decreased their participation in high-risk activities as they aged. Substantial percentages of adults and children with hemophilia B (including mild/moderate severity) altered their treatment regimens to accommodate planned activities. These findings may help inform guidelines for individualizing treatment regimens around participation in recreational activities based on hemophilia severity, baseline factor level, and activity risk and intensity. K E Y W O R D Sactivities, hemophilia B, psychosocial, treatment

How to discuss gene therapy for haemophilia? A patient and physician perspective

“…More likely to suffer from arthropathy/arthritis, more likely to require knee/hip replacement compared with the general population. 1,56 Poor mobility, self-care issues, and inability to perform usual daily activities 57,58 Social isolation Inability to participate in social or sporting activities 59 Pain Higher pain levels and functional impairment associated with anxiety, depression and unemployment. 60,61 Pain/discomfort is an area where most individuals report experiencing 'extreme' issues.…”

Neuropsychological function in children with hemophilia: A review of the Hemophilia Growth and Development Study and introduction of the current eTHINK study

“…Hemophilia is classified as mild, moderate, or severe, depending on the amount of clotting factor in the person's blood. 1 Incorporation of routine prophylactic factor replacement therapy, starting in early childhood for severe disease, now allows patients with this disorder to participate in many more physical activities 2,3 and has reduced missed school and work time. 4,5 However, despite the more widespread use of factor replacement therapy to limit symptoms of physical disability in children with severe hemophilia, little is known about the impact of the disease on their cognitive development.…”

Impact of hemophilia B on quality of life in affected men, women, and caregivers—Assessment of patient‐reported outcomes in the B‐HERO‐S study

“…Previous reports from B-HERO-S have described the psychosocial impact of hemophilia B on affected individuals, including the impact on employment, education, and participation in recreational activities. [11][12][13] Of note, while very rapid recruitment through 3 patient advocacy organizations may be expected to have biased the study population toward those most affected, B-HERO-S captured a substantial proportion of US hemophilia B patients (~4% of adults with mild and ~10% of adults with moderate hemophilia B). Most of the 299 adult participants indicated that hemophilia B had a negative impact on their work life, education, and ability to participate in recreational activities, suggesting that overall HRQoL may be impaired in individuals with hemophilia B.…”