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: 10469138
• 负责人: CHRISTIE Lynn McGee Petrenko
• 金额: $ 42.27万
• 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/10469138
• 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; Effectiveness; Family; Fetal Alcohol Spectrum Disorder; Focus Groups; Foundations; Future; Geographic Locations; Glean; Health; Health Personnel; Improve Access; Individual; Infrastructure; Intervention; Intervention Studies; Interview; Knowledge; Life; Literature; Longevity; Maintenance; Measurement; Mediating; Mental Health; Mentors; 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 Efficacy; Self-Direction; 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 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.

项目摘要/摘要 患有胎儿酒精谱系障碍(FASD)的人经历了护理障碍和较低的生活质量(QOL)。 响应FASD合作倡议(CIFASD5)改进干预措施和早期病例的目标 这项建议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 在整个生命周期内。每项干预措施都利用技术来提高可获得性并克服重大障碍 关心。这些技术干预措施多才多艺，具有良好的传播潜力，提供了高潜力的公众 对健康的影响。所有这三种干预在理论上都建立在自决理论(SDT)的基础上，并且是综合的 在“FASD-知情护理”方面拥有有用的最佳实践，源自FASD研究、临床智慧和政策。我们的 方法方法建立在我们在CIFASD4中成功开发移动医疗(MHealth)应用程序的基础上，CIFASD4 包括为3-12岁儿童的照顾者提供的家庭向前移动(FMF)连接应用程序(U01 AA026104)和 我的健康教练应用程序，适用于患有FASD的成年人(UH2 AA02050)。我们将利用我们已建立的机构完成研究目标 系统的以用户为中心的mHealth干预设计方法，强调关键利益相关者的参与 在整个开发和测试过程中。试验设计和结果衡量以实施为指导 科学框架，着眼于在社区环境中优化未来传播的成功。目标1 测试“提供者辅助的FMF连接”干预和社区医疗保健结果的延伸 (ECHO)实施方案增加了精神卫生提供者(n=250)FASD知情护理知识，自我 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远程指导培训提供商辅助的FMF Connect将证明与之相比，实践发生了更大的变化 向处于自主实施或等待名单条件下的提供商发送。一项更大规模的疗效试验，Aim 2将测试 My Health Coach应用程序改善了患有FASD(n=120)的成年人的SDT和QOL结果。应用程序的使用模式 与结果相关的信息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 输入，Aim 3将开发和评估一款由照顾者辅助的青少年mHealth应用程序的可用性，该应用程序名为 “有决心”的APP系统。确定的应用程序系统将包括青少年和照顾者应用程序，以及 支持青少年自主能力培养的同步功能，支持照顾者自主的父母养育， 和家庭生活质量。在整个生命周期中包含这三个目标有助于提高效率并相互提供信息 干预性发展。它还解决了干预研究中的空白，特别是在青春期和成年期。全 三个目标来自不同的地理区域，通过CIFASD其他网站的招聘直接受益 扩张到他们之外。对于其他CIFASD5项目和调查人员，我们提供急需的、可扩展的干预措施，以 为他们的参与者和临床环境提供测试新的诊断创新。从我们CIFASD同事的发现来看， 我们将收集对改进我们的干预措施至关重要的内容。