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主要影响非洲人后裔。这一群体是已知的 遭受与SCD疼痛的医疗管理相关的许多种族和文化不平等。认知型- 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，并减少医疗保健使用。然而，大多数SCD患者不会收到基于CBT的 由于交通不便、专业人员有限和费用高等障碍，这些人无法获得治疗。青年 SCD必须承担更多责任来管理他们的SCD痛苦，这通常会变得更多 成年期的慢性的。然而，许多年轻人在成长过程中从未养成这些重要的自我管理技能。 儿童时期没有做好应对SCD疼痛的准备，成年后也没有做好准备。迫切需要创新之痛 为患有SCD疼痛的青少年提供方便和量身定做的自我管理计划。访问Web和 非裔美国人的移动技术很高。在我们青年小组进行的定性研究中 对于SCD，家长和医疗保健专业人员表示，这些技术可以应用于满足 他们痛苦的自我管理需要。基于我们团队在开发和测试网络和移动设备方面的经验 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 青少年(12-18岁)SCD的自我管理和功能，通过开发和测试定制的网络和 基于智能手机的应用程序(支持SCD的iCanCope)。首先，我们计划应用以用户为中心的设计方法 来改进和测试该程序。该计划将包括：(I)设定目标，(Ii)以同伴为基础的社会支持， (3)疼痛自我管理训练。二是确定方案可行性和初步方案 通过先导性三点随机对照试验的有效性。初步效力将确定 将160名青年随机分为治疗组和注意力对照组。我们假设那些拿到 ICanCope与SCD将在疼痛强度、疼痛相关残疾和增加 适应性应对策略(主要结果)以及身体和情绪方面的显著改善 治疗后和6个月随访时的功能和与健康相关的生活质量(次要结果) 与接受注意力控制条件的年轻人相比。第三，我们将探索主持人和 治疗效果的中介物。这个项目代表着在提供量身定做的心理服务方面的重大进步 青少年SCD的治疗方法。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疼痛和残疾，并更好地装备年轻人，以应对成年后的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.