Leveraging Technology to Increase Quality of Life for FASD Across the Lifespan

利用技术提高 FASD 整个生命周期的生活质量

• 批准号: 10682488
• 负责人: CHRISTIE Lynn McGee Petrenko
• 金额: $ 44.1万
• 依托单位: UNIVERSITY OF ROCHESTER
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-07-01 至 2027-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10682488
• 关键词: Address; Adolescence; Adolescent; Adoption; Adult; Age; Attention; Awareness; Caregivers; Caring; Child; Child Care; Child Rearing; Childhood; Client; Clinical; Communities; Community Healthcare; Competence; Consolidated Framework for Implementation Research; Development; Developmental Disabilities; Diagnosis; Family; Fetal Alcohol Spectrum Disorder; Focus Groups; Foundations; Future; Geographic Locations; Glean; Health; Health Personnel; Individual; Infrastructure; Institution; Intervention; Intervention Studies; Interview; Knowledge; Life; Literature; Longevity; Maintenance; Maps; Mediating; Mental Health; Methodology; Methods; Mobile Health Application; Outcome; Outcome Measure; Participant; Pattern; Persons; Phase; Policies; Positioning Attribute; Process; Provider; Public Health; Quality of life; Randomized, Controlled Trials; Research; Research Personnel; Resources; Self Determination; Self Direction; Self Efficacy; Site; Social Environment; Staff Development; System; Technology; Testing; Training; Vision; Waiting Lists; Work; arm; barrier to care; care outcomes; community setting; comparison group; dashboard; effectiveness evaluation; effectiveness measure; effectiveness testing; efficacy trial; evidence base; experience; fetal diagnosis; implementation framework; implementation outcomes; improved; improved outcome; innovation; intervention effect; mHealth; multidisciplinary; novel diagnostics; patient population; recruit; research clinical testing; screening; skills; social stigma; success; system-level barriers; theories; therapy development; three-arm study; trial design; usability; user centered design

Project Summary/Abstract People with fetal alcohol spectrum disorders (FASD) experience barriers to care and a lower quality of life (QOL). Responsive to the Collaborative Initiative on FASD (CIFASD5) objectives of improving interventions and early case identification, this proposal evaluates three developmentally-appropriate and scalable interventions to improve QOL across the lifespan. Each intervention leverages technology to increase accessibility and overcome significant barriers to care. These technological interventions are versatile with good potential for dissemination, offering high potential public health impact. All three interventions are theoretically grounded in self-determination theory (SDT) and are integrated with useful best practices in “FASD-Informed Care,” derived from FASD research, clinical wisdom, and policy. Our methodological approach builds on our success developing mobile health (mHealth) applications within CIFASD4, which has included the Families Moving Forward (FMF) Connect app for caregivers of children ages 3-12 (U01 AA026104) and the My Health Coach app for adults with FASD (UH2 AA02050). Study aims will be accomplished using our established systematic user-centered design approach to mHealth interventions, which emphasizes engagement of key stakeholders throughout the development and testing process. Trial design and outcome measurement are guided by implementation science frameworks with the vision towards optimizing success of future dissemination in community settings. Aim 1 tests whether the “Provider-Assisted FMF Connect” intervention and an Extension of Community Healthcare Outcomes (ECHO) implementation package increases mental health providers’ (n=250) FASD-informed care knowledge, self- efficacy, and practice change (including screening and diagnosis of FASD). We hypothesize mental health providers trained in Provider-Assisted FMF Connect through ECHO tele-mentoring will evidence greater practice change compared to providers in self-directed implementation or waitlist conditions. A larger-scale efficacy trial, Aim 2 will test whether the My Health Coach app improves SDT and QOL outcomes for adults with FASD (n=120). Patterns of app usage relating to outcomes will guide further app refinements and dissemination. Leveraging advisory board and focus group input, Aim 3 will develop and assess usability of a caregiver-assisted mHealth app for adolescents called the “Determined” app system. The Determined app system will include both adolescent and caregiver apps, with synchronized features supporting adolescent self-determination skill building, caregiver autonomy-supportive parenting, and family QOL. Inclusion of these three aims across the lifespan facilitates efficient and mutually informative intervention development. It also addresses gaps in intervention research, especially in adolescence and adulthood. All three aims draw from diverse geographic regions, benefitting directly from recruitment via other CIFASD sites yet expanding beyond them. To other CIFASD5 projects and investigators, we provide much needed, scalable interventions to offer their participants and a clinical setting to test new diagnostic innovations. From findings of our CIFASD colleagues, we will glean content vital to improve our interventions.

项目概要/摘要 患有胎儿酒精谱系障碍 (FASD) 的人会遇到护理障碍和生活质量 (QOL) 较低。 响应 FASD 合作倡议 (CIFASD5) 改善干预措施和早期病例的目标 识别，该提案评估了三种适合发展且可扩展的干预措施，以改善生活质量 贯穿整个生命周期。每项干预措施都利用技术来增加可及性并克服重大障碍 关心。这些技术干预措施用途广泛，具有良好的传播潜力，为公众提供了高潜力的机会 健康影响。所有三种干预措施在理论上均以自决理论 (SDT) 为基础，并且是综合的 源自 FASD 研究、临床智慧和政策的“FASD 知情护理”有用的最佳实践。我们的 方法论建立在我们在 CIFASD4 内成功开发移动医疗 (mHealth) 应用程序的基础上，该应用程序 包含面向 3-12 岁儿童看护者的 Families Moving Forward (FMF) Connect 应用程序 (U01 AA026104) 以及 面向 FASD 成人的 My Health Coach 应用程序 (UH2 AA02050)。研究目标将利用我们既定的 以用户为中心的系统化移动医疗干预设计方法，强调关键利益相关者的参与 整个开发和测试过程。试验设计和结果衡量以实施为指导 科学框架的愿景是优化未来在社区环境中传播的成功。目标1 测试“提供者协助的 FMF Connect”干预措施是否能扩展社区医疗保健成果 (ECHO) 实施方案提高了精神卫生服务提供者 (n=250) FASD 的护理知识、自我护理知识 疗效和实践改变（包括 FASD 的筛查和诊断）。我们假设心理健康提供者 通过 ECHO 远程指导接受提供商协助的 FMF Connect 培训将证明与相比，实践发生了更大的变化 向处于自我指导实施或候补名单条件下的提供商提供。 Aim 2 是一项更大规模的疗效试验，将测试是否 My Health Coach 应用程序可改善 FASD 成人 (n=120) 的 SDT 和生活质量结果。应用程序使用模式 与结果相关的内容将指导应用程序的进一步完善和传播。利用顾问委员会和焦点小组 根据输入，目标 3 将开发并评估一款由护理人员协助的青少年移动医疗应用程序的可用性，该应用程序称为 “确定”的应用系统。确定的应用程序系统将包括青少年和看护者应用程序， 支持青少年自决技能培养、照顾者自主支持养育的同步特征， 和家庭生活质量。将这三个目标纳入整个生命周期有助于实现高效和互惠互利 干预发展。它还解决了干预研究的空白，特别是在青春期和成年期。全部 三个目标来自不同的地理区域，直接受益于其他 CIFASD 网站的招聘 扩展到超越它们。对于其他 CIFASD5 项目和研究人员，我们提供急需的、可扩展的干预措施 为参与者提供测试新诊断创新的临床环境。根据 CIFASD 同事的调查结果， 我们将收集对改进我们的干预措施至关重要的内容。

项目成果

Initial Feasibility of the "Families Moving Forward Connect" Mobile Health Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Mixed Method Evaluation Within a Systematic User-Centered Design Approach.

• DOI: 10.2196/29687
• 发表时间: 2021-12-02
• 期刊: JMIR formative research
• 影响因子: 2.2
• 作者: Petrenko CLM;Kautz-Turnbull CC;Roth AR;Parr JE;Tapparello C;Demir U;Olson HC
• 通讯作者: Olson HC

Adverse childhood experiences in children with fetal alcohol spectrum disorders and their effects on behavior.

患有胎儿酒精谱系障碍的儿童的不良童年经历及其对行为的影响。

• DOI: 10.1111/acer.15010
• 发表时间: 2023
• 期刊: Alcohol, clinical & experimental research
• 作者: Kautz-Turnbull,Carson;Rockhold,Madeline;Handley,ElizabethD;Olson,HeatherCarmichael;Petrenko,Christie
• 通讯作者: Petrenko,Christie

A Mobile Health Intervention for Fetal Alcohol Spectrum Disorders (Families Moving Forward Connect): Development and Qualitative Evaluation of Design and Functionalities.

针对胎儿酒精谱系障碍的移动健康干预（家庭前进连接）：设计和功能的开发和定性评估。

• DOI: 10.2196/14721
• 发表时间: 2020
• 期刊: JMIR mHealth and uHealth
• 影响因子: 5
• 作者: Petrenko,ChristieLm;Parr,Jennifer;Kautz,Carson;Tapparello,Cristiano;Olson,HeatherCarmichael
• 通讯作者: Olson,HeatherCarmichael