Home-based pain management training for pediatric sickle cell disease

描述(申请人提供)：镰状细胞病(SCD)是一种遗传性血液疾病，主要影响非裔美国人。阵发性疼痛是SCD的显著特征，也是最常见的健康并发症。疼痛平均每七天就有一天影响SCD儿童，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生物-心理-社会联合治疗；然而，我们缺乏关于如何最好地实施疼痛治疗并在SCD(和其他疾病)中传播有效治疗的知识。SCD的大多数疼痛发作都是在家里治疗的，这些发作绝大多数是单独用药治疗的。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。其中许多障碍可以通过使这些技能的家庭实践更具吸引力，并使用技术来指导患者通过远程监测治疗完整性的培训来克服。本提案的目标是对一项基于家庭的培训方案进行随机的可行性研究，该方案将认知行为疼痛管理添加到当前SCD儿童护理治疗(药物治疗)的标准中。我们将把这种综合的生物-心理-社会疼痛干预(药物治疗加认知-行为干预)与目前的护理治疗标准(单独药物治疗)进行比较。该方案提供了使用便携式手持设备的家庭疼痛管理技能练习，并跟踪儿童的疼痛经历。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，并允许每天向临床研究团队发送关于儿童疼痛经历和应对技能实践的电子报告。该反馈系统允许实施者有效地检测设备问题并识别对协议的误解。拟议的项目具有创新性，因为它有效地增加了对家庭疼痛管理技能发展的支持水平，在患者和临床科学家之间提供了关于治疗实施的及时和准确的反馈，并加深了我们对认知行为干预如何促进患有SCD的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-社会疼痛管理方案进行一项大型的多地点疗效研究，并传播该方案的治疗手册和辅助材料(如软件)。公共卫生相关性：疼痛发作在镰状细胞疾病中非常常见，并显著降低这些儿童与健康相关的生活质量。目前美国对镰状细胞病的疼痛管理很差，这种疾病历史上一直得不到足够的服务。拟议的项目将测试对患有镰状细胞疾病的年轻人进行认知行为应对技能培训是否会改善疼痛管理，而不仅仅是目前只使用止痛药。

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.