A5064041292- Hemophilia Treatment and Research
- Chronic Myeloid Leukemia Treatments
- Adolescent and Pediatric Healthcare
Center for Inherited Blood Disorders
2015-2021
Severe hemophilia and subsequent hemophilic arthropathy result in joint pain impaired health-related quality of life (HRQoL). Assessment HRQoL persons with (PWH), including underlying factors that drive differences, is important determining health care resource allocation making individualized clinical decisions.To examine potential associations between HRQoL, interference, self-reported arthritis age, employment, activity, bleed frequency, treatment center professional utilization.PWH (age...
Abstract The psychosocial impact of hemophilia on work was recently investigated in the Hemophilia Experiences, Results and Opportunities ( HERO ) study. findings revealed that had an for adults with moderate/severe caregivers children hemophilia. did not specifically evaluate education adults/children mild/moderate or employment spouses/partners affected children. Bridging B into Solutions (B‐HERO‐S) study evaluated lives adult men/women mild‐severe boys/girls their spouses/partners. Many...
Abstract The psychosocial impact of hemophilia on activities was recently investigated in the Hemophilia Experiences, Results and Opportunities ( HERO ) study (675 people with 561 caregivers children 10 countries). B may not be accurately reflected results, as ~75% respondents described issues affecting males A. To address needs this population, Bridging Into Solutions (B‐ ‐S) developed a pilot United States collaboration community. analysis reported here assessed engagement recreational...
Abstract Introduction The experiences of patients with mild‐to‐moderate haemophilia differ from those severe or without a bleeding disorder and include challenging diagnosis variability in symptoms treatment needs. In addition, there is significant lack data on haemophilia, many unmet needs remain to be identified addressed this group patients. Methods Challenges for these patients, including women were during roundtable meeting attended by US‐based experts healthcare professionals (e.g.,...
Background: The B-HERO-S study evaluated the impact of mild to severe hemophilia B on lives affected adults and children. Here, we assessed relationships. Methods: US with caregivers children completed separate online surveys that included questions regarding disease interpersonal Results: Most (88%) 299 completing survey had moderate B. Of those, 54% were married or in a long-term relationship, 44% single. (87%) reported their ability form close relationships partners prospective partners;...