Engaging School-Age Children with Cancer in Designing a Symptom Assessment App

拟议的K23奖支持Lauri Linder博士的职业发展，使其成为能够领导有效的跨专业多地点团队的主要研究者，以改变癌症儿童的症状管理研究。她的长期目标是实施创新的以儿童为中心的方法，用于传达医疗保健提供者可采取行动的症状，以支持启动循证症状管理干预措施。这项工作的第一步是开发一个以儿童为中心的症状评估工具，该工具可由医疗保健提供者操作，并可作为循证症状管理干预措施的一个组成部分集成到健康信息系统中。参与式研究方法与儿童注意引起儿童的偏好，代表和报告他们的症状，2）移动的技术作为健康管理干预措施，为学龄儿童的慢性病，可以集成到健康信息系统，和3）团队科学领导技能，通过进行研究，与跨专业的团队，注意战略，促进和维持有效的合作。培训计划包括课程，个人辅导，会议学习，并参加国家和国际会议，领导一个跨专业团队开展拟议的科学目标，参加她的主要导师的研究小组会议，并参加当地和国家的网络机会。林德博士的主要导师，博士凯西穆尼（护理），和共同导师，博士罗伯特凯斯勒（计算机科学），提供专业知识，在癌症症状科学和使用游戏为基础的原则，以促进健康。她组建了一个由国内和国际公认的儿童参与式研究方法，癌症儿童症状测量和管理，视频游戏设计和开发以及生物医学信息学专家组成的跨专业咨询团队。 拟议的研究解决了一个迫切需要制定儿童敏感的措施，以确定症状和减少其影响和/或持久性。儿童的发展能力，包括他们的语言和认知能力，也是父母和医疗保健提供者理解他们症状的障碍。使用数字评级的纸笔自我报告措施是基于成人的认知能力，不包括儿童的内部评估和组织信息的过程。移动的技术应用程序支持新的方法，让儿童代表他们的症状的经验，让儿童沟通的背景和意义，他们的症状，从现有的工具缺失的方面。 科学目标将分两个阶段进行。第一阶段将采用参与式方法，让患有癌症的学龄儿童和儿科肿瘤医疗保健提供者共同设计一个基于移动的技术的症状评估应用程序，该应用程序将通过iPad提供。拟议的应用程序将包括基于艺术的症状表示方法，并结合基于视频游戏的功能。这一阶段将通过一个迭代过程进行，使用低技术和高技术原型的参与式团队。编程支持将由犹他州的全国排名工程艺术和娱乐（EAE）计划在新成立的治疗游戏和应用实验室的大学提供。 第二阶段将从儿童、其父母和临床环境中的儿科肿瘤医疗保健提供者的角度评估应用的可行性和可接受性。20名6-12岁的癌症儿童将获得支持蜂窝功能的iPad，每天完成应用程序，持续5天。通过该应用程序生成的数据将传输到儿童的电子病历中，供医疗保健提供者审查。将通过确定儿童在完成应用程序时的依从性、完成应用程序的时间、缺失数据模式的审查、医疗保健提供者对病历中报告的症状的确认以及基于已确定的症状启动干预措施来评估可行性。将通过对儿童参与者、其父母和医疗保健提供者进行问卷调查和半结构化访谈来评估可接受性。 犹他州大学为实现本提案的职业发展和科学目标提供了良好的环境。护理学院在癌症症状管理和生活质量研究方面的专业知识是公认的，并提供支持服务，以促进教师的成功。位于埃克尔斯健康科学图书馆的治疗游戏和应用实验室为跨学科合作提供了一个独特的环境，以支持实现该提案的科学目标。 该K23提案的重点与国家护理研究所的战略计划一致，即通过症状管理提高生活质量，投资创新技术以改善健康结果，并支持下一代护士科学家的职业发展。实现该奖项的目标将支持在功效试验中进行测试之前对应用程序进行额外的改进，以确定使用该应用程序是否会改善症状结果。该应用程序的未来发展方向包括纳入以儿童为中心的日常健康促进活动，针对已识别症状的症状管理策略，以及在快速学习环境中使用该应用程序来比较各机构的症状结果。

DESCRIPTION (provided by applicant): The proposed K23 award supports the career development of Dr. Lauri Linder into a principal investigator capable of leading effective, interprofessional, multi-site teams to transform symptom management research for children with cancer. Her long-term goal is to implement innovative child-centric approaches for communicating symptoms that are actionable by healthcare providers to support initiation of evidence-based symptom management interventions. The initial step in this effort is to develop a child-centric symptom assessment tool that is actionable by healthcare providers and can be integrated into health information systems as a component of evidence-based symptom management interventions This K23 proposal supports this goal by providing Dr. Linder with training in 1) participatory research methods with children with attention to eliciting children's preferences for representing and reporting their symptoms, 2) mobile technology as a health management intervention for school-age children with chronic illness that can be integrated into health information systems, and 3) team science leadership skills through conducting a study with an interprofessional team with attention to strategies for promoting and sustaining effective collaborations. The training plan incorporates coursework, individual tutorials, conference-based learning, and participation in national and international meetings, leading an interprofessional team to carry out the proposed scientific aims, participating in her primary mentor's research team meetings, and participating in local and national networking opportunities. Dr. Linder's primary mentor, Dr. Kathi Mooney (nursing), and co- mentor, Dr. Robert Kessler (computer science), provide expertise in cancer symptom science and using game- based principles to promote health. She has assembled an inter-professional advisory team of nationally and internationally recognized experts in participatory research methods with children, symptom measurement and management for children with cancer, video game design and development, and biomedical informatics. The proposed research addresses a critical need to develop child-sensitive measures to identify symptoms and decrease their impact and/or persistence. Children's developmental abilities, including their verbal and cognitive abilities, also are barries for having their symptoms understood by parents and healthcare providers. Paper-and-pencil self-report measures using numeric ratings are based on adults' cognitive abilities and do not incorporate children's internal processes for appraising and organizing information. Mobile technology applications support novel approaches for children to represent their symptom experience, allowing children to communicate the context and meaning of their symptoms, aspects that are missing from existing tools. The scientific aims will be conducted in two phases. The first phase will use participatory methods to engage school-age children with cancer and pediatric oncology healthcare providers in the co-design of a mobile technology-based symptom assessment application to be delivered via an iPad. The proposed app will include arts-based approaches for symptom representation and incorporate video game-based features. This phase will conducted through an iterative process using participatory teams with low tech and high tech prototyping. Programming support will be provided by the University of Utah's nationally-ranked Engineering Arts and Entertainment (EAE) program in the newly established Therapeutic Games and Applications Lab. The second phase will evaluate the feasibility and acceptability of the application from the perspectives of children, their parents, and pediatric oncology healthcare providers in a clinical setting. Twenty children with cancer 6-12 years of age will be provided with cellular-enabled iPads to complete the app each day for 5-days. Data generated through the app will be transmitted to the child's electronic medical record for review by healthcare providers. Feasibility will be evaluated through identifying children's adherence in completing the app, time to complete the app, review of patterns of missing data, healthcare providers' acknowledgement of reported symptoms in the medical record, and initiation of interventions based on identified symptoms. Acceptability will be evaluated through questionnaires and semi-structured interviews of child participants, their parents, and healthcare providers. The University of Utah provides an excellent environment for achieving the career development and scientific aims of this proposal. The College of Nursing is recognized for expertise in cancer symptom management and quality of life research and provides support services to facilitate faculty success. The Therapeutic Games and Applications lab located in the Eccles Health Sciences Library provides a unique environment for interdisciplinary collaboration to support achievement of the scientific aims of the proposal. The focus of this K23 proposal is consistent with the strategic plan of the National Institute of Nursing Research to advance quality of life through symptom management, invest in innovative technology to improve health outcomes, and support the career development of the next generation of nurse scientists. Achieving the award aims will support additional refinements to the app prior to its testing in an efficacy trial to determine if use of the app improves symptom outcomes. Future directions for the app include incorporation of daily child- centric health promotion activities an symptom management strategies in response to identified symptoms as well as its use within rapid learning environments to compare symptom outcomes across institutions.