Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and Pilot Test.
Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and Pilot Test.
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DOI：
10.2196/jopm.9652
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发表时间：
2018-05-10
影响因子：
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通讯作者：
Wiehe, Sarah E
中科院分区：
文献类型：
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作者：
Hannon, Tamara S;Moore, Courtney M;Wiehe, Sarah E
背景：患有1型糖尿病的青少年很难达到最佳的血糖控制，部分原因是相互竞争的优先事项干扰了糖尿病的自我护理。通常，与糖尿病相关的重大家庭冲突会发生，青少年对糖尿病管理的想法和感受可能会被忽视。目的：我们研究的目的是与青少年患者和家长咨询委员会共同设计一项临床干预措施，使用共享决策来解决青少年患者和家长咨询委员会的糖尿病自我护理问题。方法：患者和家长咨询委员会由6名年龄在12岁到18岁之间患有1型糖尿病的青少年和他们的父母组成，他们的父母是通过我们机构的儿科糖尿病项目招募的。青少年和家长提供知情同意，并参加了1次或2次患者和家长咨询委员会会议，每次会议持续3至4个小时。第一次会议的主题是(1)与生活质量有关的以患者为中心的结果，父母-青少年共享的糖尿病管理，以及共享的家庭经验；(2)以患者为中心的糖尿病护理计划干预的实施和可接受性，其中使用共享决策。我们分析了录音、笔记和其他材料，以确定和提取与开发以患者为中心的糖尿病管理计划相关的想法。这些数据在视觉上被编码成类似的主题。我们利用这些信息开发了一个糖尿病管理计划工具的原型，并在第二次会议期间进行了初步测试。结果：第一次会议确定了6个主要的以患者为中心的生活质量测量领域：压力、恐惧和担忧、就餐时间挣扎、假设和判断、感觉异常和冲突。我们确定了糖尿病管理计划干预的两个主要目标：(1)将干预重点放在糖尿病痛苦和冲突解决策略上，以及(2)努力实现一个口头上的共同目标。在第二次会议中，我们根据这些发现创建了糖尿病管理计划工具，并将其用于临床试验，目的是帮助以患者为中心的目标设定。结论：1型糖尿病患者可以有效地参与到以患者为中心的研究设计中。患有1型糖尿病的青少年在他们生命中的这个时候，优先考虑减少家庭冲突和适应他们的社会环境，而不是健康结果。在设计干预措施以改善青少年1型糖尿病患者的健康结果时，认识到这一点是重要的。
BACKGROUND: Adolescents with type 1 diabetes mellitus have difficulty achieving optimal glycemic control, partly due to competing priorities that interfere with diabetes self-care. Often, significant diabetes-related family conflict occurs, and adolescents' thoughts and feelings about diabetes management may be disregarded. Patient-centered diabetes outcomes may be better when adolescents feel engaged in the decision-making process.OBJECTIVE: The objective of our study was to codesign a clinic intervention using shared decision making for addressing diabetes self-care with an adolescent patient and parent advisory board.METHODS: The patient and parent advisory board consisted of 6 adolescents (teens) between the ages 12 and 18 years with type 1 diabetes mellitus and their parents recruited through our institution's Pediatric Diabetes Program. Teens and parents provided informed consent and participated in 1 or both of 2 patient and parent advisory board sessions, lasting 3 to 4 hours each. Session 1 topics were (1) patient-centered outcomes related to quality of life, parent-teen shared diabetes management, and shared family experiences; and (2) implementation and acceptability of a patient-centered diabetes care plan intervention where shared decision making was used. We analyzed audio recordings, notes, and other materials to identify and extract ideas relevant to the development of a patient-centered diabetes management plan. These data were visually coded into similar themes. We used the information to develop a prototype for a diabetes management plan tool that we pilot tested during session 2.RESULTS: Session 1 identified 6 principal patient-centered quality-of-life measurement domains: stress, fear and worry, mealtime struggles, assumptions and judgments, feeling abnormal, and conflict. We determined 2 objectives to be principally important for a diabetes management plan intervention: (1) focusing the intervention on diabetes distress and conflict resolution strategies, and (2) working toward a verbalized common goal. In session 2, we created the diabetes management plan tool according to these findings and will use it in a clinical trial with the aim of assisting with patient-centered goal setting.CONCLUSIONS: Patients with type 1 diabetes mellitus can be effectively engaged and involved in patient-centered research design. Teens with type 1 diabetes mellitus prioritize reducing family conflict and fitting into their social milieu over health outcomes at this time in their lives. It is important to acknowledge this when designing interventions to improve health outcomes in teens with type 1 diabetes mellitus.