“ 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：
9244821
负责人：
Lori E Crosby
金额：
$ 19.5万
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/9244821
关键词：
Accident and Emergency department Acute Acute Pain Address Adherence Adolescence Adolescent Adolescent and Young Adult Affect African American Aftercare Age 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 Enhancement Technology Feedback Focus Groups Foundations Goals Health Health Status Health behavior Health behavior change Hematology Hereditary Disease Individual Informal Social Control Intervention Intervention Studies Knowledge Life Life Style Literature Minority Monitor Motivation Neurocognitive Deficit Organ Outcome Pain management Parents Participant Patients Persons Population 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 Symptoms Testing Time Treatment Efficacy Visit Vulnerable Populations Work Youth attentional control base chronic pain design disorder risk experience follow up assessment follow-up group intervention 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（由申请人提供）：镰状细胞病 (SCD) 是最常见的缩短寿命的遗传性疾病，主要影响美国的非裔美国青年。SCD 在婴儿期首先对健康产生影响，但会出现更严重的并发症（例如器官损伤、慢性疼痛）早期死亡风险）在青春期出现，对于降低 SCD 青少年的并发症和死亡率至关重要。然而，我们的试点工作表明，迫切需要制定量身定制的、基于群体的干预措施，以提高这一特别弱势群体的积极性和参与度，从而更广泛地提高他们的自我管理技能（BA）或知识、自我效能、管理个人健康所需的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、基于群体的自我管理干预措施 SCTrive，以改善 BA 和SCThrive 的青少年和年轻人 (AYAs) 的自我管理采用面对面和在线混合的形式，并由根据 SCD AYA 的输入设计的移动医疗工具 iManage 提供支持。该应用程序的目的是确定 SCThrive 的自我管理。可行性、可接受性和初步疗效旨在实现以下具体目标：1) 确定 SCThrive 干预对患有 SCD 的 AYA 的可行性和可接受性，以及 2) 进行试点随机试验(N=64) 以确定在 13-21 岁 SCD 的 AYA 中，精致的 SCThrive 干预是否优于注意力控制（按年龄和疾病严重程度分层），我们参与了 SCThrive，为期 6 周。与注意力控制相比，治疗后会导致 BA（主要结果）增加。对于目标 2，我们将继续评估可行性和可接受性，并检查 SCThrive 干预是否与 BA 6 的改善相关。我们还将探讨与治疗后 6 周的注意力控制相比，SCThrive 是否与自我管理行为和生活质量（次要结果）的更大改善相关。该团队拥有行为医学、血液学和生物信息学方面的专业知识。并合作开展了儿科 SCD 干预研究，为该提案奠定了基础，其中包括 iManage 工具的开发。该研究非常重要，因为它解决了培养行为活跃的 SCD 患者的需求，这些患者在管理其疾病方面是积极的、协作的伙伴。拟议的研究具有创新性，因为它挑战了使用个体、一维和研究者设计的行为干预措施的流行研究实践，该开发/探索性项目的结果将为 R01 应用程序检查 SCThrive 奠定基础。在一项完全有效的随机多中心试验中的疗效。

项目成果

期刊论文数量（1）

专著数量（0）

科研奖励数量（0）

会议论文数量（0）

专利数量（0）

Mobile health use predicts self-efficacy and self-management in adolescents with sickle cell disease.

移动医疗的使用可以预测患有镰状细胞病的青少年的自我效能和自我管理。

DOI：
发表时间：
2021
期刊：
影响因子：
3.6
作者：
Hood, Anna M;Nwankwo, Cara;Walton, Ashley;McTate, Emily;Joffe, Naomi;Quinn, Charles T;Britto, Maria T;Peugh, James;Mara, Constance A;Crosby, Lori E
通讯作者：
Crosby, Lori E