Korus M, Cruchley E, Stinson J N, Gold A, Anthony S J
Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, Toronto, ON, Canada.
Pediatr Transplant. 2015 Feb;19(1):107-17. doi: 10.1111/petr.12396. Epub 2014 Dec 12.
Adolescents with SOT demonstrate high rates of medication non-adherence and higher rates of graft loss compared to all other age groups. Self-management interventions encompass information-based material designed to achieve disease-related learning and changes in the participant's knowledge and skill acquisition, while providing social support. These interventions have had some success in chronic disease populations by reducing symptoms and promoting self-efficacy and empowerment. Using findings from a needs assessment, an Internet-based self-management program, Teens Taking Charge: Managing My Transplant Online, for youth with SOT was developed. This program contains information on transplant, self-management and transition skills, and opportunities for peer support. The purpose of this study was to determine the usability and acceptability of the initial three modules (Medication and Vaccines; Diet after Transplant; and Living with a Transplant Organ) of the online program from the perspectives of youth with SOT. Participants were recruited from SOT clinics at a large pediatric tertiary care center in Canada. Three iterative cycles (seven patients per iteration) of usability testing took place to refine the Web site prototype. Study procedures involved participants finding items from a standardized list of features and talking aloud about issues they encountered, followed by a semi-structured interview to generate feedback about what they liked and disliked about the program. All 21 patients (mean age = 14.9 yr) found the Web site content to be trustworthy, they liked the picture content, and they found the videos of peer experiences to be particularly helpful. Participants had some difficulties finding information within submodules and suggested a more simplistic design with easier navigation. This web-based intervention is appealing to teenagers and may foster improved self-management with their SOT. Nine additional teen and two parent modules are being developed, and the completed Web site will undergo usability testing. In the future, a randomized control trial will determine the feasibility and effectiveness of this online self-management program on adherence, self-efficacy, and transition skills.
与所有其他年龄组相比，实体器官移植（SOT）青少年的药物治疗依从性较低，移植失败率较高。自我管理干预措施包括以信息为基础的材料，旨在实现与疾病相关的学习以及参与者知识和技能获取方面的改变，同时提供社会支持。这些干预措施通过减轻症状、提高自我效能感和增强权能，在慢性病患者群体中取得了一定成效。基于需求评估的结果，为患有SOT的青少年开发了一个基于互联网的自我管理项目“青少年掌控：在线管理我的移植”。该项目包含移植、自我管理和过渡技能方面的信息，以及同伴支持的机会。本研究的目的是从患有SOT的青少年的角度确定在线项目最初三个模块（药物与疫苗；移植后的饮食；与移植器官共存）的可用性和可接受性。参与者从加拿大一家大型儿科三级护理中心的SOT诊所招募。进行了三个迭代周期（每个迭代七名患者）的可用性测试，以完善网站原型。研究程序包括让参与者从标准化的功能列表中查找项目，并大声说出他们遇到的问题，随后进行半结构化访谈，以收集他们对该项目的喜欢和不喜欢之处的反馈。所有21名患者（平均年龄 = 14.9岁）认为网站内容可信，喜欢图片内容，并且认为同伴经历的视频特别有帮助。参与者在子模块中查找信息时遇到了一些困难，并建议采用更简单的设计和更便捷的导航。这种基于网络的干预措施对青少年有吸引力，可能会促进他们对SOT的自我管理。另外九个青少年模块和两个家长模块正在开发中，完整的网站将进行可用性测试。未来，一项随机对照试验将确定这个在线自我管理项目在依从性、自我效能感和过渡技能方面的可行性和有效性。
