Home-based pain management training for pediatric sickle cell disease

描述（由申请人提供）：镰状细胞病（SCD）是一种主要影响非洲裔美国人的遗传性血液疾病。阵发性疼痛是SCD的标志性特征，也是最常见的健康并发症。患有SCD的儿童平均每7天就有1天受到疼痛的影响，每年至少有一次住院治疗。慢性疼痛的有效治疗被广泛认为需要生物-心理-社会联合治疗；然而，我们缺乏如何在SCD（和其他疾病）中最好地实施疼痛治疗和传播有效治疗的知识。大多数SCD的疼痛发作是在家里治疗的，这些发作绝大多数是单独用药物治疗的。认知行为应对技术已经显示出改善SCD疼痛管理的希望；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，可以克服许多这些障碍。本提案的目标是进行一项随机的可行性研究，以家庭为基础的培训方案，将认知行为疼痛管理添加到当前标准的SCD儿童护理治疗（药物治疗）中。我们将比较这种综合的生物心理社会疼痛干预（药物治疗加认知行为干预）与目前的标准护理治疗（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经验。正在部署的设备和软件对青少年具有很高的吸引力，可以指导参与者完成协议以促进依从性，并允许每天向临床研究团队发送有关儿童疼痛经历和应对技能练习的电子报告。该反馈系统允许实现者有效地检测设备的问题并识别对协议的误解。该项目具有创新性，因为它有效地提高了对家庭疼痛管理技能发展的支持水平，为患者和临床科学家提供了关于治疗实施的及时准确的反馈，并进一步加深了我们对认知行为干预如何促进青少年SCD患者适应性应对的理解。这项工作的长期目标是开展一项大型的、多地点的生物心理社会疼痛管理方案的疗效研究，并传播该方案的治疗手册和支持材料（如软件）。公共卫生相关性：疼痛发作在镰状细胞病中非常常见，并显著降低这些儿童与健康相关的生活质量。目前在美国镰状细胞病的疼痛管理很差，而且这种疾病在历史上一直服务不足。拟议的项目将测试对患有镰状细胞病的青少年进行认知行为应对技能的培训，是否能在目前仅使用止痛药的基础上改善疼痛管理。

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.