Home-based pain management training for pediatric sickle cell disease

描述（由申请人提供）：镰状细胞病（SCD）是一种遗传性血液疾病，主要影响非洲裔美国人。发作性疼痛是SCD的标志性特征，也是最常见的健康并发症。疼痛影响SCD儿童平均七天之一，并导致每年至少一次住院治疗。慢性疼痛的有效治疗被广泛认为需要结合生物心理社会治疗;然而，我们缺乏如何最好地实施疼痛治疗和传播有效治疗SCD（和其他疾病）的知识。SCD中的大多数疼痛发作在家中治疗，并且这些发作绝大多数仅用药物治疗。认知行为应对技术已显示出改善SCD疼痛管理的前景;然而，将认知行为训练整合到疼痛管理中存在许多障碍。通过使这些技能的家庭实践更具吸引力，并利用技术指导患者通过远程监测治疗完整性的培训，可以克服其中许多障碍。本提案的目标是对家庭培训方案进行随机可行性研究，该方案将认知行为疼痛管理添加到SCD儿童的当前护理治疗（药物治疗）标准中。我们将比较这种综合性生物心理社会疼痛干预（药物治疗加认知行为干预）与目前的标准治疗（单独药物治疗）。该协议提供了基于家庭的实践疼痛管理技能，使用便携式手持设备和跟踪儿童的疼痛体验。正在部署的设备和软件对年轻人具有很高的吸引力，通过协议指导参与者促进遵守，并允许将有关儿童疼痛体验和应对技能实践的每日电子报告发送给临床研究团队。该反馈系统允许实施者有效地检测设备的问题并识别对协议的误解。拟议的项目是创新的，因为它有效地增加了在家里发展疼痛管理技能的水平支持，为患者和临床科学家提供了及时准确的治疗实施反馈，并进一步加深了我们对认知行为干预如何促进SCD青少年适应性应对的理解。这项工作的长期目标是对生物心理社会疼痛管理协议进行大型多站点疗效研究，并传播治疗手册和支持材料（例如，软件）的协议。公共卫生相关性：疼痛发作在镰状细胞病中非常常见，并显着降低这些儿童的健康相关生活质量。目前在美国镰状细胞病的疼痛管理是穷人和疾病历来服务不足。拟议的项目将测试在认知行为应对技能方面培训患有镰状细胞病的青少年是否能改善目前仅使用止痛药的疼痛管理。

DESCRIPTION (provided by applicant): Sickle cell disease (SCD) is an inherited blood disorder that primarily affects African-Americans. Episodic pain is the hallmark feature of SCD and the most frequent health complication. Pain affects children with SCD one out of seven days on average and leads to at least one hospitalization per year. Effective treatment of chronic pain is widely recognized as requiring combined biopsychosocial treatment; however, we lack knowledge of how to best implement pain treatment and disseminate efficacious treatments in SCD (and other disorders). Most pain episodes in SCD are treated at home and these episodes are overwhelmingly treated with medication alone. Cognitive-behavioral coping techniques have shown promise for improving pain management in SCD; however, there are a number of barriers to integrating cognitive-behavioral training into pain management. Many of these barriers can be overcome by making home-based practice of these skills more attractive and using technology to guide patients through the training with remote monitoring of treatment integrity. The goal of the present proposal is to conduct a randomized, feasibility study of a home-based training protocol that adds cognitive-behavioral pain management to the current standard of care treatment (pharmacotherapy) for children with SCD. We will compare this integrated biopsychosocial pain intervention (pharmacotherapy plus cognitive-behavioral intervention) to the current standard of care treatment (pharmacotherapy alone). The protocol provides home-based practice of pain management skills using portable handheld devices and tracking of the child's pain experience. The device and software being deployed has a high attractiveness to youths, guides participants through the protocol to promote adherence, and allows for daily electronic reports to be sent to the clinical research team regarding the child's pain experience and practice of coping skills. This feedback system allows implementers to efficiently detect problems with the devices and identify misunderstandings about the protocol. The proposed project is innovative because it efficiently increases the level support for developing pain management skills at home, provides timely and accurate feedback between patients and clinical scientists about treatment implementation, and furthers our understanding of how cognitive- behavioral intervention can promote adaptive coping in youths with SCD. The long term goals of this work are to conduct a large, multi-site efficacy study of a biopsychosocial pain management protocol and to disseminate a treatment manual and supporting materials (e.g., software) for the protocol. PUBLIC HEALTH RELEVANCE: Pain episodes are very common in sickle cell disease and significantly decrease health-related quality of life for these children. Current pain management for sickle cell disease in the United States is poor and the disease has been historically underserved. The proposed project will test whether training youths with sickle cell disease in cognitive-behavioral coping skills improves pain management above and beyond the current use of pain medication only.