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.

项目总结/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）降低。 响应FASD合作倡议（CIFASD 5）的目标，改善干预措施和早期病例 识别，该提案评估了三种适合发展和可扩展的干预措施，以改善生活质量 在整个生命周期中。每一项干预措施都利用技术来提高可及性，克服重大障碍， 在乎这些技术干预措施用途广泛，具有良好的传播潜力，可为公众提供高潜力的服务。 健康影响。所有这三种干预措施在理论上都以自决理论为基础， 从FASD研究、临床智慧和政策中获得的“FASD知情护理”的最佳实践。我们 方法论方法建立在我们在CIFASD 4中成功开发移动的健康（mHealth）应用程序的基础上，该应用程序 包括面向3-12岁儿童看护者的Families Moving Forward（FMF）Connect应用程序（U 01 AA 026104）， 我的健康教练应用程序为成人FASD（UH 2 AA 02050）。研究目标将使用我们的既定 系统的以用户为中心的移动健康干预措施设计方法，强调关键利益相关者的参与 在整个开发和测试过程中。试验设计和结局测量以实施为指导 科学框架的愿景是使未来在社区环境中的传播取得最大成功。要求1 测试“提供者协助的FMF连接”干预和社区医疗保健成果的扩展是否 （ECHO）实施包增加了精神卫生提供者（n=250）的FASD知情护理知识，自我 疗效和实践变化（包括FASD的筛查和诊断）。我们假设心理健康提供者 通过ECHO远程指导接受提供者辅助FMF连接培训的人将证明， 提供者在自我导向的实施或候补条件。一项更大规模的疗效试验，目标2将测试是否 我的健康教练应用程序改善了FASD成人的SDT和QOL结果（n=120）。应用程序使用模式 将指导应用程序的进一步完善和传播。利用咨询委员会和焦点小组 投入，目标3将开发和评估一个青少年辅助移动健康应用程序的可用性，称为 “确定”的应用程序系统。Determined应用程序系统将包括青少年和护理人员应用程序， 支持青少年自我决定技能建设的同步特征，照顾者的支持性养育， 家庭QOL在整个生命周期中纳入这三个目标有助于提高效率和相互提供信息 干预发展。它还解决了干预研究的差距，特别是在青春期和成年期。所有 三个目标来自不同的地理区域，直接受益于通过其他CIFASD网站的招聘， 超越他们。对于其他CIFASD 5项目和调查人员，我们提供急需的可扩展干预措施， 为参与者提供临床环境，以测试新的诊断创新。根据我们CIFASD同事的发现， 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