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首页> 外文期刊>European Journal of Haematology >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
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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

机译：轻度至严重血友病对美国男性，女性和血友病儿童的娱乐活动的影响：血糖血友病的经验，结果和机遇进入解决方案（B-HERO-S）研究

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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 similar to 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.
机译：血友病对活动的心理社会对活动的影响最近在血友病经验，结果和机遇（HERO）研究中（675人血友病和10个国家的血友病儿童561人）。血友病的影响可能无法准确地反映在英雄的结果中，与75％的受访者描述了影响血友病A的问题的问题。为了满足这种人群的需求，将血糖血友病的经验，结果和机遇进入解决方案（ B-HERO-S在美国与血友病界合作开发为美国的试验研究。此处的分析报告评估了在血友病B和150名儿童血友病儿童的299名成人报告的活动中享有娱乐活动和治疗方案的变化，血友病患儿的150名护理人员。几乎所有血友病B（98％）的成年人都对他们的参与产生了负面影响由于血友病有关的问题，大多数护理人员（90％）报道，血友病B对其儿童在娱乐活动的参与产生负面影响。确定过去活动的主要原因之一是瘀伤或出血的风险（成人/血友病儿童B，49％/ 41％）。特别是，有血友病B的成年人报告了与活动相关的出血的历史，大多数成年人降低了他们参与他们年迈的高风险活动。大量成年人和血友病（包括轻度/中度严重程度）的百分比改变了治疗方案以适应计划的活动。这些调查结果可能有助于为基于血友病严重程度，基线因素水平和活动风险和强度的娱乐活动的娱乐活动的各种各人的治疗方案提供指导。

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