Early Identification Of Developmental Delay Among Infants And Toddlers With Sickle Cell Disease

早期识别患有镰状细胞病的婴儿和幼儿发育迟缓

基本信息

批准号：
10590311
负责人：
Catherine Rose Hoyt
金额：
$ 12.74万
依托单位：
WASHINGTON UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2023
资助国家：
美国
起止时间：
2023-07-01 至 2028-06-30
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10590311
关键词：
3 year old Academy Address Adult Affect African ancestry Age Age Months American American Society of Hematology Assessment tool Award Black race Caregivers Child Child Development Child Rearing Child Welfare Child health care Clinical Research Cognition Cognitive Collaborations Complex Data Development Development Plans Developmental Delay Disorders Diagnosis Doctor of Philosophy Early Intervention Early identification Education Educational Curriculum Educational Intervention Environment Evaluation Evidence based intervention Family Family member Funding Future Goals Grant Guidelines Health Healthcare Systems Home Home environment Home visitation Human Impaired cognition Incidence Infant Infant Development Infection Inflammation Inherited Institutional Racism Intervention Interview Laboratories Life Longevity Measures Medical Care Team Mendelian disorder Mental Health Mentored Patient-Oriented Research Career Development Award Mentors Methods Missouri Names National Heart, Lung, and Blood Institute Neuronal Plasticity Newborn Infant Nursery Schools Occupational Therapist Outcome Outcome Measure Pain Parents Pediatric Hospitals Pediatrics Persons Pilot Projects Population Poverty Preparation Prevention Protocols documentation Randomized, Controlled Trials Readiness Recommendation Rehabilitation therapy Research School-Age Population Schools Scientist Severities Sickle Cell Sickle Cell Anemia Stroke Testing Therapeutic Intervention Time Toddler Training Unemployment United States Visit Work career career development caregiver education caregiver interventions cognitive development cohort comparison control comparison group cost effective intervention early experience feasibility testing implementation science implementation strategy improved improved outcome infancy innovation multidisciplinary patient population peer programs prospective recruit research and development scale up screening service intervention skills social culture standardize measure success teacher theories therapeutically effective therapy development trial design

3 year old Academy Address Adult Affect African ancestry Age Age Months American American Society of Hematology Assessment tool Award Black race Caregivers Child Child Development Child Rearing Child Welfare Child health care Clinical Research Cognition Cognitive Collaborations Complex Data Development Development Plans Developmental Delay Disorders Diagnosis Doctor of Philosophy Early Intervention Early identification Education Educational Curriculum Educational Intervention Environment Evaluation Evidence based intervention Family Family member Funding Future Goals Grant Guidelines Health Healthcare Systems Home Home environment Home visitation Human Impaired cognition Incidence Infant Infant Development Infection Inflammation Inherited Institutional Racism Intervention Interview Laboratories Life Longevity Measures Medical Care Team Mendelian disorder Mental Health Mentored Patient-Oriented Research Career Development Award Mentors Methods Missouri Names National Heart, Lung, and Blood Institute Neuronal Plasticity Newborn Infant Nursery Schools Occupational Therapist Outcome Outcome Measure Pain Parents Pediatric Hospitals Pediatrics Persons Pilot Projects Population Poverty Preparation Prevention Protocols documentation Randomized, Controlled Trials Readiness Recommendation Rehabilitation therapy Research School-Age Population Schools Scientist Severities Sickle Cell Sickle Cell Anemia Stroke Testing Therapeutic Intervention Time Toddler Training Unemployment United States Visit Work career career development caregiver education caregiver interventions cognitive development cohort comparison control comparison group cost effective intervention early experience feasibility testing implementation science implementation strategy improved improved outcome infancy innovation multidisciplinary patient population peer programs prospective recruit research and development scale up screening service intervention skills social culture standardize measure success teacher theories therapeutically effective therapy development trial design

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项目摘要

PROJECT SUMMARY/ABSTRACT This K23 application proposes a research and career development plan for Catherine Hoyt, PhD, OTD to establish herself as an independent rehabilitation scientist focused on the early identification and intervention for developmental deficits among infants and toddlers with sickle cell disease (SCD). SCD is the most common monogenic disorder in humans and is primarily inherited by who identify as Black or of African descent. Complications associated with SCD (e.g., infection, pain, stroke) are common in the first years of life. In our earlier work, we found that developmental deficits were present in > 50% of children with SCD before the age of 3 but are none had been diagnosed or referred to intervention services. Further, children whose caregivers participated in a home-based caregiver education program demonstrated improved test scores on standardized measures. Thus, when developmental deficits are overlooked, children miss a critical opportunity for intervention that could improve their developmental trajectory. The American Society of Hematology (ASH) recommends frequent developmental screening starting in the first years of life for all children with SCD. Yet few, if any, studies have described the incidence and severity of developmental deficit among children with SCD compared to controls. Consistent with the American Academy of Pediatrics (AAP) guidelines, this research will evaluate children with SCD at 9, 18, and 30 months using the best available developmental measure, the Bayley Scales of Infant Development-4 (Bayley), to determine the incidence of developmental deficit over the first 3 years of life compared to demographically match peers (n = 100, Aim 1). If developmental deficits are identified, scores will be shared with the child's healthcare team so they can be addressed. Based on theory and evidence, the proposed study will also test a multi-component Sickle Cell Collaboration for Child Development (SCCCD) intervention. The SCCCD combines skilled therapeutic intervention to address developmental deficits, the Parents as Teachers® curriculum and specific SCD education. Our innovative SCCCD intervention is adapted from a pilot study and will provide 12 home visits to caregivers and children with SCD over the course of 1 year (n = 25, Aim 2). Interviews with caregivers who participated, as well as those who declined, will identify contextual determinants (i.e., facilitator and barriers) to prepare for future testing and scaling up of the SCCCD intervention (Aim 3). The results from this K23 award will provide data to understand the onset of developmental deficit in this understudied population and identify the next steps to conduct a randomized control trial to test our SCCCD intervention in an R01 level grant submission. These mentored research aims, combined with a career development plan for advanced training in implementation science (Goal A), mixed methods (Goal B), prospective trial design (Goal C) and professional development (Goals D, E) will enable Dr. Hoyt to launch a career as an independent scientist.

项目摘要/摘要该K23申请提出了凯瑟琳·霍伊特（Catherine Hoyt）博士的研究和职业发展计划将自己确立为独立的康复科学家，专注于早期识别和干预用于镰状细胞疾病（SCD）的婴儿和幼儿中的缺陷。 SCD是最常见的人类中的单基因疾病主要由识别为黑人或非洲血统的人遗传。与SCD相关的并发症（例如，感染，疼痛，中风）在生命的头几年很常见。在我们的较早的工作，我们发现> 50％的SCD儿童在年龄之前出现了缺陷 3，但没有被诊断出或转介给干预服务。此外，他们的照顾者的孩子参加家庭护理人员教育计划表明，考试成绩提高了标准化措施。当忽略发展不足时，孩子会错过一个关键的机会对于可以改善其发展轨迹的干预措施。美国血液学学会（ASH）建议所有SCD儿童从生命的头几年开始经常进行筛查。然而很少有研究（如果有的话）描述了患有儿童的发展和严重性与对照组相比，SCD。与美国儿科学会（AAP）指南一致研究将在9、18和30个月时使用最佳的发育时间评估SCD的儿童措施，婴儿发育4（Bayley）的Bayley量表确定发育事件与人口匹配的同龄人相比，生命的头三年中的赤字（n = 100，AIM 1）。如果确定了开发人员的缺陷，分数将与孩子的医疗团队共享，以便他们可以成为解决。基于理论和证据，拟议的研究还将测试多组分的镰状细胞儿童发展协作（SCCCD）干预。 SCCCD结合了熟练的疗法解决发展定义的干预措施，父母为Teacters®课程和特定的SCD 教育。我们创新的SCCCD干预措施是根据试点研究改编的，将提供12次家庭访问在1年的过程中，护理人员和患有SCD的儿童（n = 25，AIM 2）。与护理人员的访谈参与以及拒绝的人将确定上下文确定词（即协调员和障碍）为将来的测试和扩展SCCCD干预做准备（AIM 3）。该K23奖的结果将提供数据以了解该知识人群中发育不足的发作并确定进行随机控制试验以测试我们的SCCCD干预措施的下一步提交。这些受过指导的研究目标，结合了高级培训的职业发展计划在实施科学（目标A），混合方法（目标B），前瞻性试验设计（目标C）和专业发展（目标D，E）将使霍伊特博士能够从事独立科学家的职业。