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 胎儿酒精谱系障碍（FASD）的人会经历护理障碍和较低的生活质量（QOL）。 响应FASD（CIFASD5）的合作计划，以改善干预措施和早期案例 识别，该提案评估了三种适合发展的和可扩展的干预措施，以改善QOL 整个生命周期。每种干预都利用技术来提高可访问性，并克服了重大障碍 关心。这些技术干预措施具有多功能性，具有良好的传播潜力，提供了高潜力的公众 健康影响。这三个干预措施均基于自决理论（SDT），并被整合 通过FASD研究，临床智慧和政策衍生出的“ FASD信息护理”中有用的最佳实践。我们的 方法论方法基于我们在CIFASD4中开发移动健康（MHealth）应用程序的成功基础， 包括向前进的家庭（FMF）Connect App for 3-12岁儿童（U01 AA026104）和 FASD成人的My Health Coach应用程序（UH2 AA02050）。研究目标将使用我们的既定 系统以用户为中心的MHealth干预措施的设计方法，该方法强调关键利益相关者的参与 通过开发和测试过程。试验设计和结果测量是通过实施指导的 科学框架具有优化社区环境中未来传播成功的愿景。目标1 测试“提供者辅助的FMF连接”干预措施以及社区医疗保健成果的扩展 （ECHO）实施软件包增加了心理健康提供者（n = 250）FASD了解的护理知识，自我 功效和实践变化（包括FASD的筛查和诊断）。我们假设心理健康提供者 通过Echo Telementing在提供商辅助的FMF连接中接受培训将证明更改练习更改 在自我指导的实施或候补条件下给提供者。大规模效率试验，AIM 2将测试是否是否 My Health Coach应用程序改善了FASD成人的SDT和QOL成果（n = 120）。应用程序使用模式 与结果有关，将指导进一步的应用程序改进和传播。利用顾问委员会和焦点小组 输入，AIM 3将开发和评估护理人员辅助MHealth应用程序的可用性 “确定”应用系统。确定的应用程序系统将包括青少年和照顾者应用程序，并具有 同步功能支持青少年的自决技能建设，照顾者自主支持育儿， 和家庭QOL。在整个生命周期中纳入这三个目标 干预开发。它还解决了干预研究的差距，尤其是在青少年和成年期。全部 三个目标来自潜水员地理区域，直接从其他CIFASD网站招聘中受益 超越它们。对于其他CIFASD5项目和调查人员，我们提供了急需的可扩展干预措施 提供参与者和临床环境，以测试新的诊断创新。从我们的CIFASD同事的发现， 我们将收集至关重要的内容，以改善干预措施。