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.

项目概要 患有先天性巨细胞病毒 (cCMV) 的婴儿出现长期后遗症的风险较高，例如 智力障碍、感音神经性听力损失和脑瘫。大多数先前的工作已经检查过 使用出生时疾病严重程度来预测患有 cCMV 的婴儿的发育 结果（例如“正常”与“异常”发展）在很大程度上忽略了环境或社会心理 可能影响长期结果的影响。一般来说，母亲的压力和较差的应对技巧是两个因素 这些影响与高危婴儿的发育结果较差有关。正在检查 患有 cCMV 的婴儿的发育轨迹可能有助于更细致地了解其出现 或减少发育迟缓，以及相关的母亲经历。更好地理解 cCMV 婴儿发育、母亲的压力源、经历和感知需求可能会产生最接近的目标 与其他情况一样，进行干预以改善患有 cCMV 的婴儿的结局。检查婴儿 cCMV 发育轨迹及其与母亲压力、幸福感和养育经历的关系 对于创建可改善特定疾病的预期指导、干预措施和支持系统至关重要 婴儿结局。因此，我们将招募并保留 100 名母婴配对的出生队列，并测量 婴儿期前 12 个月的纵向发育，旨在实现以下目标： 目标 1) 识别患有 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相关；目标 2) 确定是否发育 轨迹成员资格与通过自我报告工具衡量的产妇压力和幸福感相关； 目标 3) 通过连续、重复的方式检查母亲养育患有 cCMV 婴儿的经历 从出生到 12 个月大的非结构化定性访谈。 Pesch 博士的研究 PI 是一个发展和 行为儿科医生，其最近的研究和临床工作集中在诊断和 cCMV 的治疗。在跨学科导师和顾问团队的支持下，Pesch 博士将获得 使用虚拟平台测量婴儿发育、招募和保留方面的经验 罕见病队列的研究、最小化偏见的内部研究方法和家庭复原力理论。这个K23 支持的研究培训将增加对婴儿发育轨迹的了解 cCMV，以及这些轨迹与产妇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，以改善婴儿的健康状况 发展成果。