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.

项目摘要 与镰状细胞疾病（SCD）有关的疼痛最常在家中受到患者和家庭的治疗，但这 管理通常是次优的。 SCD主要影响非洲血统的人。众所周知 与SCD疼痛的医疗管理有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 生活质量和医疗保健使用降低。但是，大多数患有SCD的人都不会收到基于CBT的 由于障碍，可访问性差，专业人士的可用性有限和高成本等障碍所致。青年 使用SCD，必须承担更多的责任，以控制其SCD疼痛，这通常会变得更加 成年时期的慢性。但是，许多青年从未在期间发展这些重要的自我管理技能 童年时期，不准备应对成年人的SCD疼痛。迫切需要创新的痛苦 为SCD疼痛的年轻人访问和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很高。在我们小组进行的定性研究中，青年 对于SCD，父母和医疗保健专业人员，这些技术可以应用于满足 他们的痛苦自我管理需要。根据我们在开发和测试网络和移动的团队经验 - 在其他人群中基于疼痛管理计划，我们假设这种方法也将是 有效地通过SCD为青年提供疼痛自我管理。在此应用中，我们的目标是改善痛苦 通过开发和测试量身定制的网络和 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 完善并测试该程序。该计划将包括：（i）目标设定，（ii）基于同行的社会支持， （iii）疼痛自我管理培训。其次，我们将确定程序可行性和初始程序 通过飞行员三个站点随机对照试验的有效性。将确定初步效力 与注意力控制相比，在160名年轻人中随机治疗。我们假设那些接受的年轻人 ICancope与SCD的ICancope将增加疼痛强度，与疼痛相关的残疾和增加的降低 自适应应对策略（主要结果）以及身体和情感的显着改善 在治疗后和6个月的随访中，功能和与健康相关的生活质量（次要结果） 与接受注意力控制状况的年轻人相比。第三，我们将探索主持人和 治疗效果的介体。该项目在提供量身定制的心理方面取得了重大进步 SCD青年的疗法。我们的长期目标是开发有效而灵活的治疗方法 以低成本交付，以减轻SCD疼痛和残疾，并更好地装备青年人以成年人的身份应对SCD。