(SCANS) Sickle Cell Anemia Neurodevelopmental Screening - Mentoring and Research in Patient Oriented Research

(扫描) 镰状细胞性贫血神经发育筛查 - 以患者为导向的研究的指导和研究

• 批准号: 10685968
• 负责人: Allison A King
• 金额: $ 10.95万
• 依托单位: WASHINGTON UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-20 至 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10685968
• 关键词: Academy; Address; Adherence; Adolescent; Age; American; American Society of Hematology; Anemia; Award; Awareness; Biological Factors; Caring; Cerebral Infarction; Child; Child Development; Childhood; Chronic; Clinic; Clinical; Clinical Investigator; Cognition; Cognitive; Cognitive deficits; Development; Developmental Delay Disorders; Discipline; Early Intervention; Education; Evidence based intervention; Evidence based practice; Faculty; Family; Funding; Future; Future Generations; General Practitioners; Goals; Grant; Guideline Adherence; Guidelines; Health Personnel; Health Professional; Hematologist; Hematology; Hemolytic Anemia; Home; Hybrids; Impaired cognition; Imprisonment; Individual; Infant; Infrastructure; Inherited; Intervention; Interview; Language Development; Medical; Medical Students; Medicine; Mentors; Methods; Occupational Therapist; Occupational Therapy; Outcome; Oxygen; Patients; Pediatric Hematology; Pediatrics; Pilot Projects; Population; Poverty; Preventive; Preventive care; Primary Care; Principal Investigator; Probability; Provider; Psychologist; Psychology; Public Health; Recommendation; Research; Resources; Risk Factors; Scanning; Schools; Scientist; Sickle Cell Anemia; Sleep Apnea Syndromes; Specialist; Structure; Surveys; System; Time; Toddler; Training; Underrepresented Minority; Unemployment; Visit; Vulnerable Populations; career; clinically significant; cognitive testing; disability; early childhood; early screening; evidence base; experience; high risk; implementation research; implementation science; implementation strategy; improved; improved outcome; innovation; interest; low socioeconomic status; patient oriented research; practice-based research network; primary care provider; recruit; remediation; scale up; screening; skills; social; student mentoring; success; training opportunity

Sickle cell disease (SCD) is an inherited hemolytic anemia associated with under-recognized developmental delay and cognitive deficits. Chronic anemia, low oxygen saturations, sleep- disordered breathing, cerebral infarcts, and low socioeconomic status are risk factors for clinically significant cognitive impairments. However, SCD can be an invisible disability. Patients’ development is not routinely screened and deficits may remain undiagnosed. Early childhood is the most important time to screen for delays because children can receive evidence-based and federally mandated resources to remediate development before entering school. Without such resources, this vulnerable population has a high probability of poor academic attainment, unemployment, and incarceration. The long-term goal of the current project is to prepare young children with SCD for early childhood education and sustained academic success. To achieve this, Dr. King proposes to study the implementation of developmental screening of young children with SCD, a typically overlooked population. Dr. King is the principal investigator of a U01 grant in the Sickle Cell Disease Implementation Consortium to provide cognitive screening and intervention for adolescents with SCD. She leads a team of hematologists, a neuropsychologist, a social psychologist, occupational therapists, and implementation scientists to both conduct interventions and study the implementation science outcomes in order to “scale up” evidence-based practices. She will use this established infrastructure to complete the following aims: Aim 1. To determine the barriers and facilitators of surveillance and screening of early childhood development of children with SCD age 0-3 years, and Aim 2. To identify specific implementation strategies to address the barriers and facilitators to early childhood development screening. The results will inform the appropriate intervention to improve developmental screening in children with SCD. This proposal will enhance Dr. King’s career by allowing her to gain the necessary skills to recruit, educate, and mentor a cadre of health professionals focused on implementation science for improving clinical and educational outcomes in SCD. Dr. King has a long track record of mentoring students, trainees, and junior faculty from multiple scientific disciplines including medicine, public health, psychology, education, and occupational therapy. She has a particular interest in mentoring underrepresented minorities, and she will continue to do so to develop future leaders.

镰状细胞病 (SCD) 是一种遗传性溶血性贫血，与未被充分认识的疾病相关 发育迟缓和认知缺陷。慢性贫血、低氧饱和度、睡眠障碍。 呼吸紊乱、脑梗塞和社会经济地位低下是危险因素 然而，SCD 可能是一种看不见的残疾。 患者的发育并未得到常规筛查，缺陷可能仍未得到早期诊断。 童年是筛查发育迟缓的最重要时期，因为儿童可以接受 基于证据和联邦授权的资源，用于在进入之前修复发展 如果没有这些资源，这个弱势群体很可能陷入贫困。 学业成就、失业和监禁 当前的长期目标。 该项目旨在帮助患有 SCD 的幼儿做好接受幼儿教育和持续教育的准备 为了实现这一目标，金博士建议研究实施 对患有 SCD 的幼儿（通常被忽视的人群）进行发育筛查。 King 是镰状细胞病实施 U01 资助项目的首席研究员 为患有 SCD 的青少年提供认知筛查和干预的联盟。 血液学家、神经心理学家、社会心理学家、职业治疗师组成的团队， 和实施科学家进行干预并研究实施情况 她将利用这一既定的科学成果来“扩大”基于证据的实践。 目标 1. 确定基础设施建设的障碍和促进因素 0-3岁SCD儿童早期发育的监测和筛查， 目标 2. 确定解决障碍和促进因素的具体实施策略 儿童早期发育筛查的结果将为采取适当的干预措施提供依据。 改善 SCD 儿童的发育筛查 该提案将增强 King 博士的能力。 让她获得招募、教育和指导骨干人员所需的技能，从而实现职业生涯的发展 卫生专业人员专注于科学以改善临床和教育实施 King 博士在指导学生、实习生和初级学生方面有着长期的记录。 来自多个科学学科的教师，包括医学、公共卫生、心理学、 她对指导特别感兴趣。 代表性不足的少数族裔，她将继续这样做以培养未来的领导人。

项目成果

Pediatric Neurodevelopmental Delays in Children 0 to 5 Years of Age With Sickle Cell Disease: A Systematic Literature Review.

• DOI: 10.1097/mph.0000000000002091
• 发表时间: 2021-04-01
• 期刊: Journal of pediatric hematology/oncology
• 作者: Knight LMJ;King AA;Strouse JJ;Tanabe P
• 通讯作者: Tanabe P

Preferences for Participation Measurement Among Individuals Diagnosed With Cancer: A Qualitative Content Analysis.

癌症诊断个体的参与测量偏好：定性内容分析。

• DOI: 10.1177/15394492231181104
• 发表时间: 2024
• 期刊: OTJR : occupation, participation and health
• 作者: L'Hotta,AllisonJ;Varughese,TaniyaE;Lyons,KathleenD;Trebelhorn,Audrey;Manohar,Annamayil;King,AllisonA
• 通讯作者: King,AllisonA

Trajectories of participation in daily life among individuals newly diagnosed with cancer: A 5-month longitudinal study.

• DOI: 10.1007/s00520-023-07672-z
• 发表时间: 2023-03-14
• 期刊: Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer

Clinical practice guideline and expert consensus recommendations for rehabilitation among children with cancer: A systematic review.

癌症儿童康复的临床实践指南和专家共识建议：系统评价。

• DOI: 10.3322/caac.21783
• 发表时间: 2023
• 期刊: CA: a cancer journal for clinicians
• 作者: L'Hotta,AllisonJ;Randolph,SamanthaB;Reader,Ben;Lipsey,Kim;King,AllisonA
• 通讯作者: King,AllisonA

Multimodal Ambulatory Monitoring of Daily Activity and Health-Related Symptoms in Community-Dwelling Survivors of Stroke: Feasibility, Acceptability, and Validity.

• DOI: 10.1016/j.apmr.2022.06.002
• 发表时间: 2022-10
• 期刊: ARCHIVES OF PHYSICAL MEDICINE AND REHABILITATION
• 影响因子: 4.3
• 作者: Lau, Stephen C. L.;Connor, Lisa Tabor;King, Allison A.;Baum, Carolyn M.
• 通讯作者: Baum, Carolyn M.