Johns Hopkins University, School of Medicine, Baltimore, MD, USA.
Kennedy Krieger Institute, Baltimore, MD, USA; Johns Hopkins University, School of Education, Baltimore, MD, USA.
Patient Educ Couns. 2023 Nov;116:107935. doi: 10.1016/j.pec.2023.107935. Epub 2023 Aug 3.
Supporting childhood cancer survivors with neurocognitive late effects is critical and requires additional attention in the research arena. This convening project's aim was to engage parents, healthcare providers, and education stakeholders in order to identify research priorities regarding patient/family-provider communication about neurocognitive impacts associated with childhood cancer.
Specific components of the Stakeholder Engagement in quEstion Development (SEED) method were combined with an online e-Delphi consensus building approach. Multiple modalities were utilized for engagement including in-person/hybrid meetings, email/Zoom/call communications, targeted-asynchronous learning activities by stakeholders, iterative surveys, and hands-on conceptual modeling.
Twenty-four (parents n = 10, educators n = 5, healthcare providers n = 9) participated in the year-long project, generating 8 research questions in the stakeholder priority domains of training families/caregiver, access of neuropsychological assessment, tools to facilitate communication and training medical providers.
This paper illustrates a successful stakeholder convening process using multi-modal engagement to establish research priorities. The resulting questions can be utilized to guide research projects that will fill gaps to providing optimal care to children with neurocognitive late effects.
This process can be used as a template for tackling other healthcare issues that span across disciplines and domains, where stakeholders have rare opportunities to collaborate.
支持患有神经认知晚期效应的儿童癌症幸存者至关重要，这在研究领域需要额外的关注。本次专题会议项目旨在让家长、医疗保健提供者和教育利益相关者参与进来，以便确定与儿童癌症相关的神经认知影响的患者/家庭提供者沟通方面的研究重点。
采用利益相关者参与问题开发（SEED）方法的特定组成部分，结合在线电子德尔菲共识建立方法。采用多种方式进行参与，包括面对面/混合会议、电子邮件/Zoom/电话沟通、利益相关者的针对性异步学习活动、迭代调查和实际概念建模。
24 名（家长 n=10、教育者 n=5、医疗保健提供者 n=9）参加了为期一年的项目，在培训家庭/照顾者、神经心理评估的获取、促进沟通和培训医疗提供者的工具等利益相关者优先领域生成了 8 个研究问题。
本文展示了一种使用多模式参与建立研究重点的成功利益相关者召集过程。由此产生的问题可用于指导研究项目，这些项目将填补为患有神经认知晚期效应的儿童提供最佳护理的空白。
该过程可作为解决跨越学科和领域的其他医疗保健问题的模板，在这些问题中，利益相关者很少有机会合作。
