肥胖管理中的意识、关爱和治疗以增强血友病肥胖患者的自主权（ACTION-TO-HOPE）：对美国血友病治疗中心专业人员的调查结果。

Awareness, Care and Treatment In Obesity maNagement to inform Haemophilia Obesity Patient Empowerment (ACTION-TO-HOPE): Results of a survey of US haemophilia treatment centre professionals.

机构信息

University of Colorado Anschutz Medical Campus, Aurora, CO, USA.

University of Minnesota Medical Center, Minneapolis, MN, USA.

出版信息

Haemophilia. 2020 Jan;26 Suppl 1:20-30. doi: 10.1111/hae.13919.

DOI:10.1111/hae.13919

PMID:32017338

Abstract

BACKGROUND

Despite the high prevalence of overweight and obesity in the United States, few studies have assessed the impact of obesity on haemophilia-specific outcomes or experiences/perceptions of healthcare providers (HCPs) treating haemophilia.

AIM

The Awareness, Care and Treatment In Obesity maNagement to inform Haemophilia Obesity Patient Empowerment (ACTION-TO-HOPE) study was designed to identify HCP insights on the unique challenges of patients with haemophilia and obesity/overweight (PwHO) and the barriers to chronic weight management.

METHODS

An online survey collected data from haemophilia treatment centre-based HCPs. Respondents included 10 adults and 29 paediatric haematologists, 27 nurses/nurse practitioners/physician assistants, 22 physical therapists and 17 social workers.

RESULTS

Almost all HCPs rated obesity of moderate/high concern and reported that weight significantly affects future health and has an impact on life expectancy, yet fewer than 60% reported discussing the impact of weight on health with their patients. HCPs reported that few PwHO tried to lose weight; not many were 'successful'. HCPs perceived a desire to feel better physically and joint pain as top motivating factors. HCPs believe that PwHO would have less joint bleeding and pain and greater mobility if they lost weight. HCPs viewed lack of exercise and food preferences/habits as the biggest barriers to initiating/maintaining weight loss and therefore recommended increasing exercise and healthier eating to their patients. However, physical activity in this patient population is limited and requires advice and support.

CONCLUSIONS

Most HCPs appreciated the impact of obesity on joint bleeding, pain, and function and quality of life. Reduced food intake and increased activity are the most commonly recommended weight-loss strategies but the least likely to be successful. HCPs desire additional education/materials to understand weight management for PwHO.

摘要

背景

尽管美国超重和肥胖的患病率很高，但很少有研究评估肥胖对血友病特定结局的影响，或评估治疗血友病的医护人员（HCP）对肥胖的看法和感受。

目的

肥胖管理对血友病患者赋权的认识、护理和治疗（ACTION-TO-HOPE）研究旨在确定 HCP 对肥胖血友病患者（PwHO）的独特挑战以及慢性体重管理障碍的看法。

方法

一项在线调查收集了来自血友病治疗中心的 HCP 数据。受访者包括 10 名成人和 29 名儿科血液病学家、27 名护士/护士执业医师/医师助理、22 名物理治疗师和 17 名社会工作者。

结果

几乎所有的 HCP 都认为肥胖处于中度/高度关注，报告体重显著影响未来健康并影响预期寿命，但不到 60%的人报告与患者讨论体重对健康的影响。HCP 报告说，很少有 PwHO 试图减肥；“成功”的人不多。HCP 认为，改善身体健康和关节疼痛是减肥的最大动力。HCP 认为，如果 PwHO 减肥，他们的关节出血和疼痛会减少，活动能力会增强。HCP 认为缺乏运动和食物偏好/习惯是启动/维持体重减轻的最大障碍，因此建议他们的患者增加锻炼和更健康的饮食。然而，该患者人群的身体活动受到限制，需要建议和支持。