Congenital cytomegalovirus: Infant developmental trajectories and parent experiences

先天性巨细胞病毒：婴儿发育轨迹和父母经历

• 批准号: 10424643
• 负责人: MEGAN H. PESCH
• 金额: $ 16.96万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-16 至 2026-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10424643
• 关键词: Address; Affect; Age-Months; Awareness; Behavioral; Birth; Cerebral Palsy; Characteristics; Child; Child Development; Child Health; Child Rearing; Childhood; Clinical; Cognitive; Coping Skills; Development; Developmental Delay Disorders; Developmental Disabilities; Diagnosis; Disease; Early Diagnosis; Early Intervention; Early treatment; Education; Emotional; Ensure; Failure; Family; Feeling; Functional disorder; Future; Guilt; Health; Health Personnel; Hearing; Infant; Infant Development; Institutes; Intellectual functioning disability; Intervention; Interview; Knowledge; Lead; Life; Link; Low income; Measures; Mentors; Mission; Mothers; Nature; Newborn Infant; Outcome; Outcome Measure; Parents; Patient Self-Report; Personal Satisfaction; Persons; Pilot Projects; Productivity; Psychosocial Influences; Randomized Controlled Trials; Rare Diseases; Regrets; Rehabilitation therapy; Research; Research Methodology; Research Support; Research Training; Resources; Risk; Self Efficacy; Sensorineural Hearing Loss; Services; Severity of illness; Shame; Shapes; Stress; Support System; Traction; Uncertainty; Work; base; cohort; congenital cytomegalovirus; coping; depressive symptoms; design; disability; empowerment; experience; high risk infant; improved; improved outcome; infancy; infant monitoring; infant outcome; innovation; instrument; long-term sequelae; maternal stress; pediatrician; progressive hearing loss; recruit; resilience; response; screening program; social; stressor; theories; virtual platform

PROJECT SUMMARY Infants born with congenital cytomegalovirus (cCMV) are at heightened risk long-term sequelae such as intellectual disability, sensorineural hearing loss and cerebral palsy. Most prior work has examined development in infants with cCMV using disease severity at birth to predict broadly defined long-term outcomes (e.g. “normal” vs. “abnormal” development) largely ignoring environmental or psychosocial influences that may shape long-term outcomes. Maternal stress and poorer coping skills, in general, are two such influences that have been associated with poorer developmental outcomes in at-risk infants. Examining developmental trajectories in infants with cCMV may allow for a more nuanced appreciation of the emergence or lessening of developmental delays, along with correlating maternal experiences. A better understanding of cCMV infant development, mothers’ stressors, experiences and perceived needs may yield proximal targets for intervention, as in other conditions, to improve outcomes of infants with cCMV. Examining cCMV infant developmental trajectories, their relationship with maternal stress, well-being and parenting experiences are critical to creating disease-specific anticipatory guidance, interventions and support systems that may improve infant outcomes. Therefore we will recruit and retain a birth cohort of 100 mother-infant dyads, and measure infant development longitudinally across the first 12 months of infancy to address the following aims: Aim 1) To identify distinct trajectories of development in infants with cCMV, and to determine whether trajectories are associated with baseline characteristics of the infant, and mother; Aim 2) To determine whether developmental trajectory membership is associated with maternal stress and well-being measured by self-report instruments; and Aim 3) To examine mothers’ experiences of parenting an infant with cCMV through sequential, repeated unstructured qualitative interviews from birth to 12 months of age. Study PI, Dr. Pesch, is a developmental and behavioral pediatrician whose recent research and clinical work has centered around the diagnosis and treatment of cCMV. With the support of an interdisciplinary tem of mentors and an advisor, Dr. Pesch will gain experiences in the measurement of infant development using a virtual platform, the recruitment and retention of a rare disease cohort, insider research methods to minimize bias and family resilience theory. This K23 supported research training will increase the understanding of the developmental trajectories of infants with cCMV, and the relationships of those trajectories with maternal stress and well-being. These findings will lead to a future maternal empowerment intervention for mothers of infants with cCMV to improve infant developmental outcomes.

项目总结 出生时携带先天性巨细胞病毒(CCMV)的婴儿有更高的长期后遗症风险，如 智力残疾、感音神经性耳聋和脑性瘫痪。大多数以前的工作都已经检查过了 应用出生时疾病严重程度预测广义的长期CCMV婴儿的发展 结果(例如“正常”与“不正常”的发展)在很大程度上忽视了环境或心理社会 可能塑造长期结果的影响。一般来说，母性压力和较差的应对技能是两个原因 这种影响与高危婴儿较差的发育结局有关。检视 患有CCMV的婴儿的发育轨迹可能允许对其出现的更细微的评价 或减少发育迟缓，以及相关的母性经历。更好地理解 CCMV婴儿发育、母亲的压力源、经历和感知的需求可能会产生最近的目标 像在其他情况下一样，干预以改善患有CCMV的婴儿的预后。检查CCMV婴儿 发展轨迹及其与母亲压力、幸福感和育儿经历的关系是 对创建可能改善的针对疾病的预期指导、干预和支持系统至关重要 婴儿结局。因此，我们将招募和保留100名母婴双胞胎出生队列，并测量 婴儿期前12个月的纵向发展，以实现以下目标：目标1)至 确定患有CCMV的婴儿的不同发育轨迹，并确定这些轨迹是否 与婴儿和母亲的基线特征有关；目的2)确定是否发育 轨迹成员关系与母亲的压力和幸福感有关，由自我报告工具测量； 目的3)通过连续、重复的方式考察母亲养育患有CCMV的婴儿的经历 从出生到12个月大的非结构化定性访谈。Pesch博士，研究PI是一种发展性和 行为儿科医生，他最近的研究和临床工作都集中在诊断和治疗上 CCMV的治疗。在一批跨学科导师和顾问的支持下，佩奇博士将获得 使用虚拟平台测量婴儿发育、招募和留住婴儿的经验 对罕见病队列、内部研究方法、尽量减少偏见和家庭复原力理论。这个K23 辅助性研究培训将增加对婴儿发育轨迹的了解 CCMV，以及这些轨迹与母亲压力和幸福感的关系。这些发现将导致 未来对患有CCMV的婴儿的母亲进行母亲赋权干预，以改善婴儿 发展成果。