PINPOINT: Gaming technology to engage adolescent sickle cell patients in precision pain Phase I

PINPOINT：游戏技术让青少年镰状细胞病患者参与精准疼痛第一阶段

• 批准号: 9789059
• 负责人: Julia Berteletti
• 金额: $ 63.16万
• 依托单位: KLEIN BUENDEL, INC.
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-01-12 至 2022-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9789059
• 关键词: 17 year old; Abnormal Hemoglobins; Acute; Address; Adolescent; Adult; Affect; African American; Age; Arteries; Blood Vessels; Blood flow; Caring; Cellular Phone; Child; Childhood; Clinical; Cognitive; Communication; Comorbidity; Data; Development; Development Plans; Disease; Erythrocytes; Esthetics; Evaluation; Experimental Designs; Family; Family member; Focus Groups; Frequencies; Future; Genetic Diseases; Health; Healthcare; Hematological Disease; Hemoglobin; Hispanics; Hospitalization; Hour; Individual; Information Systems; Inherited; Knowledge; Knowledge acquisition; Learning; Left; Life; Measurement; Measures; Mechanics; Medical; Methods; Morbidity - disease rate; Organ; Organ failure; Outcome; Pain; Pain Assessment Tool; Pain Measurement; Pain intensity; Pain management; Paper; Parents; Patient Outcomes Assessments; Patient Self-Report; Patients; Personal Satisfaction; Phase; Play; Provider; Quality of life; Questionnaires; Reporter; Reporting; Research; Self Care; Self Efficacy; Severities; Sickle Cell; Sickle Cell Anemia; Sickle Hemoglobin; Small Business Innovation Research Grant; Stroke; Suggestion; Symptoms; Tablet Computer; Tablets; Technology; Teenagers; Testing; Thinking; Time; Tissues; Translating; Treatment outcome; Work; acute chest syndrome; associated symptom; base; care providers; clinically significant; cognitive ability; cognitive interview; cohesion; commercialization; design; diaries; digital; effective therapy; experience; health care service utilization; improved; innovation; mobile application; mortality; novel strategies; pain score; pain symptom; pediatric patients; phase 1 study; programs; prototype; research and development; response; satisfaction; sickling; skill acquisition; skills; social; technological innovation; tool; treatment choice; usability

Sickle cell disease (SCD) is the most common inherited blood disorder in the U.S. and disproportionately affects African Americans and Hispanics. Approximately, 1,000 U.S. children are born with SCD annually. SCD results from abnormal hemoglobin and causes red blood cells (RBCs) to become misshaped (“sickle-shaped”). Sickled cells can block the flow of blood in small arteries causing tissue and organ damage and other life- threatening comorbidities. SCD complications can be serious and have a significant impact upon well-being and quality of life. Pain is the hallmark symptom associated with SCD, and is the most common clinical problem seen in children and the number one cause of SCD-related hospital admissions. If left untreated, these painful episodes can result in morbidity and mortality. Accurate assessment of pain specifiers (type, frequency, and intensity of pain) can help with ameliorating pain quickly and effectively. Despite children being accurate self-reporters of their pain, strategies which are effective and engaging to assist with pain identification and communication of pain are lacking. In a Phase I SBIR, our team examined the feasibility and acceptability of a gamified tablet application (Pinpoint) intended to encourage teens to talk about and assess their SCD pain. The Phase I specific aims were : (1) work with an Expert Advisory Board (EAB) of experts to develop a new pain assessment tool (PAT) to engage adolescent SCD patients, improve pain specification by patients, and improve pain management by clinicians; (2) conduct cognitive interviews and focus groups with 13-17 year old SCD patients to guide and refine development of app content, design, and aesthetics to fully develop a functioning prototype; (3) conduct usability testing with 13-17 year old SCD patients to assess functionality, navigation, and satisfaction; (4) conduct cognitive interviews with medical providers to provide input on app content, perceived barriers to use, and its potential for clinical use and integration to inform future implementation; and (5) develop a specifications document to outline the Phase II development plan. Deliverables were met and feasibility was confirmed by the EAB. The proposed Phase II project will (1) develop a fully programmed, interactive Pinpoint app consisting of 5 modules addressing pain identification and communication; (2) conduct usability testing of Pinpoint to evaluate the user interface, ease of use, and perceived barriers in order to optimize the app prior to large scale evaluation (n=14); and (3) test the full app with 13-17 year olds with SCD (n=100) using a within-subjects design to evaluate changes in (a) knowledge acquisition for communicating about pain and types of pain; (b) the Pain Assessment; (c) SCD general knowledge and self- efficacy; (d) family cohesion; and (e) app usage. Overall, the proposed project has the potential to significantly impact the health of SCD teens by providing important skill acquisition for communicating about and identifying pain. This project is innovative and timely. Pinpoint will be the first tablet app to identify and translate specific pain types for SCD into a gamified app using applied gamification principles.

镰状细胞病 (SCD) 是美国最常见的遗传性血液疾病，且发病率不成比例 每年大约有 1,000 名美国儿童出生时患有 SCD。 由血红蛋白异常引起，并导致红细胞 (RBC) 变形（“镰刀形”）。 镰状细胞可以阻塞小动脉中的血液流动，导致组织和器官损伤以及其他生命- 威胁性的 SCD 并发症可能很严重，并对健康产生重大影响。 疼痛是与 SCD 相关的标志症状，也是最常见的临床症状。 如果不及时治疗，这些问题是儿童中常见的问题，也是导致 SCD 相关住院的首要原因。 准确评估疼痛指标（类型、频率、 尽管儿童准确，但可以帮助快速有效地缓解疼痛。 自我报告他们的疼痛，有效且有吸引力的策略来协助疼痛识别和 在第一阶段 SBIR 中，我们的团队检查了疼痛的可行性和可接受性。 游戏化平板电脑应用程序 (Pinpoint) 旨在鼓励青少年谈论和评估他们的 SCD 疼痛。 第一阶段的具体目标是：(1) 与专家咨询委员会 (EAB) 合作开发一种新的疼痛方法 评估工具 (PAT) 吸引青少年 SCD 患者，提高患者的疼痛规范，并改善 (2) 对13-17岁的SCD进行认知访谈和焦点小组 患者指导和完善应用程序内容、设计和美学的开发，以充分开发功能 原型；(3) 对 13-17 岁的 SCD 患者进行可用性测试，以评估功能、导航和 (4) 与医疗服务提供者进行认知访谈，以提供有关应用程序内容、感知的信息 使用障碍及其临床使用和整合的潜力，为未来的实施提供信息；(5) 制定规范文件来概述第二阶段开发计划的实现和交付成果。 拟议的第二阶段项目的可行性已得到 EAB 的确认。 交互式 Pinpoint 应用程序由 5 个模块组成，解决疼痛识别和沟通问题 (2) 对 Pinpoint 进行可用性测试，以评估用户界面、易用性和感知障碍，以便 在大规模评估之前优化应用程序 (n=14)；以及 (3) 与 13-17 岁的人一起测试完整的应用程序 SCD (n=100) 使用受试者内设计来评估 (a) 知识获取方面的变化 (b) 疼痛评估 (c) SCD 常识和自我评估； 功效；(d) 家庭凝聚力；以及 (e) 应用程序的使用 总体而言，拟议的项目具有显着的潜力。 通过提供重要的沟通和交流技能来影响 SCD 青少年的健康 Pinpoint 是第一个识别疼痛的平板电脑应用程序。 使用应用的游戏化原理将 SCD 的特定疼痛类型转化为游戏化应用程序。