iCanCope with Sickle Cell Disease

项目摘要 与镰状细胞病（SCD）相关的疼痛最常由患者和家人在家中治疗，但这 管理通常是次优的。SCD主要影响非洲裔人。据了解， 在SCD疼痛的医疗管理方面遭受许多种族和文化上的不平等。认知- 促进疼痛自我管理的行为疗法（CBT）可以减少症状，改善 生活质量和医疗保健使用减少。然而，大多数患有SCD的人不接受基于CBT的治疗。 由于无障碍、专业人员有限和费用高昂等障碍，无法获得治疗。青年 SCD患者必须承担更多的责任来管理他们的SCD疼痛，这通常会变得更加 成年后的慢性病然而，许多年轻人从未发展这些重要的自我管理技能， 儿童期和准备不足，以科普SCD疼痛作为成年人。对创新疼痛的迫切需求 自我管理计划，可访问和量身定制的青年与SCD疼痛。访问Web和 非裔美国人的移动的技术水平很高。在我们小组进行的定性研究中， 与SCD，父母和医疗保健专业人员表示，这些技术可以应用于满足 他们的疼痛自我管理需求。基于我们团队在开发和测试Web和移动的方面的经验， 基于其他人群的疼痛管理计划，我们假设这种方法也将 有效地为患有SCD的青少年提供疼痛自我管理。在这个应用程序中，我们的目标是改善疼痛 通过开发和测试定制的网络， 基于智能手机的应用程序（带SCD的iCanCope）。首先，我们计划应用以用户为中心的设计方法 来完善和测试这个程序该计划将包括：（一）目标设定，（二）基于同伴的社会支持， 疼痛自我管理训练。第二，确定方案可行性和初步方案 通过一项试点三个地点的随机对照试验的有效性。初步效果将确定 在160名年轻人中，随机分为治疗组和注意力控制组。我们假设那些接受了 带有SCD的iCanCope将更大程度地减轻疼痛强度、疼痛相关残疾并增加 适应性应对策略（主要结局）以及身体和情绪的显著改善 治疗后和6个月随访时的功能和健康相关生活质量（次要结局） 与接受注意力控制条件的年轻人相比。第三，我们将探索版主， 治疗效果的介质。这个项目代表了在提供量身定制的心理治疗方面的一个重大进步。 治疗青年SCD。我们的长期目标是开发有效和灵活的治疗方法， 以低成本提供，以减少SCD的疼痛和残疾，并更好地装备青少年，以科普成年后的SCD。

Project Summary Pain related to sickle cell disease (SCD) is most often treated in the home by patients and families, but this management is typically suboptimal. SCD mostly affects people of African descent. This population is known to suffer many racial and cultural inequities related to the medical management of SCD pain. Cognitive- behavioral therapies (CBT) that promote pain self-management can lead to symptom reduction, improved quality of life, and decreased healthcare use. However, most people with SCD do not receive CBT-based treatment due to barriers such as poor accessibility, limited availability of professionals, and high costs. Youth with SCD must assume more responsibility for managing their SCD pain, which typically becomes more chronic in adulthood. However, many youth never develop these important self-management skills during childhood and are poorly prepared to cope with SCD pain as adults. There is a critical need for innovative pain self-management programs that are accessible and tailored for youth with SCD pain. Access to web and mobile technologies among African Americans is high. In a qualitative study conducted by our group, youth with SCD, parents, and healthcare professionals indicated that these technologies could be applied to meet their pain self-management needs. Based on our team experiences in developing and testing web- and mobile- based pain management programs in other populations, we hypothesize that this approach will also be effective for delivering pain self-management to youth with SCD. In this application, our goal is to improve pain self-management and functioning in youth (aged 12-18) with SCD by developing and testing a tailored web and smartphone-based application (iCanCope with SCD). First, we plan to apply a user-centered design approach to refine and beta test the program. The program will include: (I) goal setting, (II) peer-based social support, and (III) pain self-management training. Second, we will determine program feasibility and initial program effectiveness through a pilot three-site randomized controlled trial. Preliminary effectiveness will be determined in 160 youth randomized to treatment compared to attention control. We hypothesize that youth who receive iCanCope with SCD will achieve greater reduction in pain intensity, pain-related disability and increased adaptive coping strategies (primary outcomes) as well as significant improvement in physical and emotional functioning and health-related quality of life (secondary outcomes) at post-treatment and 6-month follow-up compared to youth who receive the attention-control condition. Third, we will explore moderators and mediators of treatment effect. This project represents a significant advance in delivering tailored psychological therapies for youth with SCD. Our long-term goal is to develop effective and flexible treatments that can be delivered at low cost to reduce SCD pain and disability, and better equip youth to cope with SCD as adults.