Department of Hematology, St. Jude Children's Research Hospital, Memphis, TN, USA.
Rush Hemophilia and Thrombophilia Center, Rush University Medical Center, Chicago, IL, USA.
Haemophilia. 2021 Mar;27(2):229-236. doi: 10.1111/hae.14228. Epub 2021 Feb 16.
Health literacy (HL) and health numeracy (HN) are underestimated barriers to treatment adherence in patients with haemophilia.
To test the ability of an educational intervention to improve knowledge, HL, HN, adherence and joint health in adolescent and young adult (AYA) males with haemophilia.
We performed a longitudinal pilot study of 41 participants aged 12-21 years with haemophilia A or B during two clinic visits 6-12 months apart. The first visit included a comprehensive pre-intervention assessment: demographics, knowledge survey, Montreal Cognitive Assessment testing, 5-question tool to assess baseline HN, assessment of HL with the Rapid Estimate of Adolescent Literacy in Medicine tool, history of adherence and Haemophilia Joint Health Score (HJHS). An educational intervention using a visual aid explained basic pharmacokinetic (PK) concepts and personal teaching regarding haemophilia treatment regimens was used during this visit. The second visit included a post-intervention assessment: a reassessment of knowledge, HL, HN, HJHS, adherence to prescribed therapy and number of joint bleeds since the pre-intervention visit.
Forty-one males with haemophilia A or B were enrolled in the study. Of these, 33 completed the post-intervention assessment. Knowledge (p = .002) and HN (p = .05) were significantly improved post-intervention, although the HL, number of joint bleeds, adherence to prescribed therapy and HJHS were not.
Participants with low HL and/or HN may benefit from alternate methods of education such as audiovisual material. Education using audiovisual materials improved knowledge and HN in this study; however, this did not affect adherence to prescribed therapy.
健康素养（HL）和健康算数能力（HN）是血友病患者治疗依从性的被低估的障碍。
测试教育干预措施在青少年和年轻男性血友病患者中提高知识、HL、HN、依从性和关节健康的能力。
我们对 41 名年龄在 12-21 岁的 A 型或 B 型血友病患者进行了一项为期 6-12 个月的纵向试点研究，在两次就诊之间进行。第一次就诊包括全面的干预前评估：人口统计学、知识调查、蒙特利尔认知评估测试、用于评估 HN 的 5 项问题工具、使用快速估计青少年医学素养工具评估 HL、依从性和血友病关节健康评分（HJHS）的历史。在这次就诊中，使用视觉辅助工具进行了一项教育干预，解释了基本的药代动力学（PK）概念和个人的血友病治疗方案。第二次就诊包括干预后评估：知识、HL、HN、HJHS、对规定治疗的依从性和自干预前就诊以来的关节出血次数的再评估。
研究纳入了 41 名 A 型或 B 型血友病男性患者。其中，33 名患者完成了干预后评估。知识（p=0.002）和 HN（p=0.05）在干预后显著提高，尽管 HL、关节出血次数、对规定治疗的依从性和 HJHS 没有提高。
HL 和/或 HN 较低的患者可能受益于替代的教育方法，如视听材料。在这项研究中，使用视听材料的教育提高了知识和 HN；然而，这并没有影响对规定治疗的依从性。
