“ Improving Self-Management in Adolescents with Sickle Cell Disease”

– 改善镰状细胞病青少年的自我管理 –

基本信息

批准号：
9107966
负责人：
Lori E Crosby
金额：
$ 23.4万
依托单位：
CINCINNATI CHILDRENS HOSP MED CTR
依托单位国家：
美国
项目类别：
财政年份：
2016
资助国家：
美国
起止时间：
2016-04-01 至 2018-03-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9107966
关键词：
Accident and Emergency department Acute Acute Pain Address Adherence Adolescence Adolescent Adolescent and Young Adult Affect African American Aftercare Age Attention Behavior Behavior Therapy Behavioral Behavioral Medicine Bioinformatics Biological Caregivers Caring Childhood Chronic Chronic Disease Communication Control Groups Development Dimensions Disease Disease Management Economically Deprived Population Emergency department visit Feedback Focus Groups Foundations Goals Health Health Status Health behavior Health behavior change Hematology Hereditary Disease Individual Informal Social Control Intervention Intervention Studies Knowledge Lead Life Life Style Literature Minority Monitor Motivation Neurocognitive Deficit Organ Outcome Pain management Parents Participant Patients Persons Protocols documentation Quality of life Race Randomized Readiness Research Research Personnel Risk Self Efficacy Self Management Severity of illness Sickle Cell Sickle Cell Anemia Social Environment Technology Testing Time Visit Vulnerable Populations Work Youth base chronic pain design experience follow-up health care service utilization high risk improved infancy innovation innovative technologies mHealth medication compliance mortality novel peer peer support prevent primary outcome programs public health relevance randomized trial reduce symptoms secondary outcome skills success tool young adult

项目摘要

DESCRIPTION (provided by applicant): Sickle cell disease (SCD), the most common life-shortening genetic disorder, affects primarily African American youth in the U.S. SCD has its first health impact in infancy but more severe complications (e.g. organ damage, chronic pain, risk for early mortality) emerge in adolescence. Effective self-management skills are critical to decrease complications and mortality in adolescents with SCD. Prior studies in SCD self- management have focused on a single dimension (e.g. adherence) and assumed a high level of patient motivation and engagement. However, our pilot work indicates a compelling need to develop tailored, group- based interventions to increase motivation and engagement in this particularly vulnerable population to improve their self-management skills more broadly. Behavioral activation (BA) or the knowledge, self-efficacy, readiness and skills necessary to manage one's health, is potentially an important mechanism for improving disease self-management and preventing poor outcomes. We developed a novel, tailored, group-based self- management intervention, SCThrive, to improve BA and self-management in adolescents and young adults (AYAs) with SCD. SCThrive uses a mixed in-person and online format and is supported by a mHealth tool designed with input from AYAs with SCD, iManage. The objective of this application is to determine SCThrive's feasibility, acceptability and preliminary efficacy ia the following specific aims: 1) determine the feasibility and acceptability of the SCThrive intervention for AYAs with SCD, and 2) conduct a pilot randomized trial (N=64) to determine whether the refined SCThrive intervention is superior to an attention control in increasing BA in AYAs with SCD ages 13-21 (stratified by age and disease severity). We hypothesize that participation in SCThrive over a 6-week period as compared to attention control will lead to increased BA (primary outcome) at post-treatment. For Aim 2, we will continue to assess feasibility and acceptability and examine whether the SCThrive intervention is associated with improvements in BA 6 weeks after treatment. We will also explore whether SCThrive is associated with greater improvements in self-management behaviors and quality of life (secondary outcomes) compared to attention control 6-weeks after treatment. The team has expertise in behavioral medicine, hematology, and bioinformatics and has collaborated on pediatric SCD intervention studies that lay the foundation for this proposal including the development of the iManage tool. The study is significant because it addresses the need for developing behaviorally-activated patients with SCD who are engaged, collaborative partners in managing their health to decrease symptoms. The proposed research is innovative because it challenges the prevailing research practice of using individual, one-dimensional, and investigator-designed behavioral interventions. Results from this developmental/exploratory project will lay the foundation for an R01 application to examine SCThrive's efficacy in a fully powered randomized multisite trial.

描述（由适用提供）：镰状细胞疾病（SCD）是最常见的遗传疾病，它影响了美国的原发性非洲裔美国青年，SCD在婴儿期有其第一个健康影响，但更严重的并发症（例如器官损害，慢性疼痛，对早期死亡率的风险）在青少年中出现。有效的自我管理能力对于降低SCD青少年的并发症和死亡率至关重要。 SCD自我管理的先前研究集中在单个维度（例如依从性）上，并假定患者的动力和参与度很高。但是，我们的飞行员工作表明，有必要开发量身定制的基于群体的干预措施，以提高这种特别脆弱的人群的动力和参与度，以更广泛地提高其自我管理能力。行为激活（BA）或管理健康健康所需的知识，自我效能，准备和技能，可能是改善疾病自我管理和预防不良结果的重要机制。我们开发了一种新颖的，量身定制的基于团体的自我管理干预，SCTHRIES，以改善与SCD的青少年和年轻人（AYA）的BA和自我管理。 SCTHRIVE使用混合面对面和在线格式，并由MHealth工具提供了支持，该工具由AYAS带有SCD，Imanage的输入。 The objective of this application is to determine SCThrive's feasibility, acceptability and preliminary effectiveness ia the following specific aims: 1) determine the feasibility and acceptability of the SCThrive intervention for AYAs with SCD, and 2) conduct a pilot randomized trial (N=64) to determine whether the refined SCThrive intervention is superior to an attention control in increasing BA in AYAs with SCD ages 13-21 (stratified by age and disease严重性）。我们假设与注意力控制相比，在6周内参与SCTHRIVE将导致治疗后的BA（主要结果）增加。对于AIM 2，我们将继续评估可行性，可接受性和检查是否与治疗后6周的BA改善有关。我们还将探索与注意力控制在治疗后的6周相比，SCTHRIVE是否与自我管理行为和生活质量（次要结果）的改善相关。该团队在行为医学，血液学和生物信息学方面拥有专家，并已在儿科SCD干预研究中合作，为该建议奠定了基础，包括开发Imanage工具。这项研究很重要，因为它解决了发展行为激活的SCD患者的需求，这些患者参与，协作合作伙伴管理其健康以减少符号。拟议的研究具有创新性，因为它挑战了使用个人，一维和研究者设计的行为干预措施的主要研究实践。该发展/探索项目的结果将为R01应用奠定基础，以检查SCTHRIVES在全功率的随机多站点试验中的有效性。