iCanCope with Sickle Cell Disease

iCanCope 治疗镰状细胞病

• 批准号: 9767808
• 负责人: Carlton Dampier
• 金额: $ 44.62万
• 依托单位: SEATTLE CHILDREN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-01 至 2021-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9767808
• 关键词: Accident and Emergency department; Acute; Address; Adolescent; Adult; Affect; African; African American; Aftercare; Age; Canada; Caregivers; Caring; Cellular Phone; Characteristics; Child; Childhood; Chronic; Cognitive Therapy; Demographic Factors; Development; Disease; Effectiveness; Effectiveness of Interventions; Emotional; Face; Family; Future; Gender; Genetic; Goals; Health; Health Care Costs; Health Professional; Health Status; Health system; Healthcare; Hematological Disease; Home environment; Income; Internet; Intervention; Lead; Mediating; Mediator of activation protein; Medical; Needs Assessment; Outcome; Pain; Pain intensity; Pain management; Parents; Participant; Patient Education; Patients; Pediatric Hematologist; Population; Program Accessibility; Program Effectiveness; Published Comment; Quality of life; Randomized; Randomized Controlled Trials; Recurrence; Resources; Role; Sampling; Self Efficacy; Self Management; Sickle Cell Anemia; Site; Social Development; Social Perception; Social support; Technology; Testing; Therapeutic Intervention; Training; Youth; aged; attentional control; base; coping; cost; disability; evidence base; experience; family management; flexibility; follow-up; health care disparity; health care service utilization; health related quality of life; improved; innovation; intervention effect; mobile computing; pain reduction; pain self-management; peer; primary outcome; programs; psychologic; psychosocial; reduce symptoms; satisfaction; secondary outcome; self-management program; service gap; skills; skills training; treatment effect; user centered design

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.

项目概要 与镰状细胞病 (SCD) 相关的疼痛最常由患者和家属在家中治疗，但这 管理通常不是最理想的。 SCD 主要影响非洲人后裔。该人群众所周知 遭受与 SCD 疼痛的医疗管理相关的许多种族和文化不平等。认知的- 促进疼痛自我管理的行为疗法（CBT）可以减轻症状，改善疼痛 生活质量和医疗保健使用减少。然而，大多数患有 SCD 的人并没有接受基于 CBT 的治疗 由于可及性差、专业人员有限以及费用高等障碍，治疗受到阻碍。青年 患有 SCD 的人必须承担更多的责任来管理他们的 SCD 疼痛，这种疼痛通常会变得更加严重 成年后呈慢性。然而，许多年轻人在学习期间从未发展出这些重要的自我管理技能。 儿童时期，成年后应对 SCD 疼痛的准备不足。迫切需要创新的阵痛 为患有 SCD 疼痛的青少年提供且量身定制的自我管理计划。访问网络和 非裔美国人的移动技术水平很高。在我们小组进行的一项定性研究中，青年人 家长和医疗保健专业人士表示，SCD 可以应用这些技术来满足 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是 可以有效地为患有 SCD 的青少年提供疼痛自我管理。在此应用中，我们的目标是改善疼痛 通过开发和测试定制的网络和 SCD 青少年（12-18 岁）的自我管理和功能 基于智能手机的应用程序（带有 SCD 的 iCanCope）。首先，我们计划采用以用户为中心的设计方法 完善和测试该程序。该计划将包括：(I) 目标设定，(II) 基于同伴的社会支持， (III)疼痛自我管理训练。其次，我们将确定方案可行性和初步方案 通过三中心随机对照试验的有效性。初步效果将确定 在 160 名青少年中随机接受治疗与注意力控制进行比较。我们假设接受治疗的青少年 iCanCope 结合 SCD 将更大程度地减少疼痛强度、疼痛相关的残疾以及增加 适应性应对策略（主要结果）以及身体和情绪的显着改善 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 治疗效果的中介因素。该项目代表了在提供定制心理服务方面的重大进步 患有 SCD 的青少年的治疗方法。我们的长期目标是开发有效且灵活的治疗方法 以低成本提供，以减少 SCD 疼痛和残疾，并更好地帮助青少年成年后应对 SCD。