Health and Psychosocial Outcomes in Young Children with Cleft Palate

患有腭裂的幼儿的健康和心理社会结果

基本信息

批准号：
10298607
负责人：
CANICE Ellen CRERAND
金额：
$ 77.54万
依托单位：
RESEARCH INST NATIONWIDE CHILDREN'S HOSP
依托单位国家：
美国
项目类别：
财政年份：
2021
资助国家：
美国
起止时间：
2021-08-01 至 2026-07-31
项目状态：
未结题

来源：
https://reporter.nih.gov/project-details/10298607
关键词：
3 year old Address Adult Affect Age Age-Months American Appearance Assessment tool Behavioral Birth Body mass index Caregiver Burden Caregivers Caring Child Child Health Cleft Lip Cleft Palate Clinical Cross-Sectional Studies Data Data Set Demographic Factors Diagnosis Emotional Enrollment Ensure Ethnic Origin Face Family Family Study Future Geography Goals Growth Health Health Care Costs Hispanics Impairment Individual Infant Insurance Intervention Interview Literature Longitudinal Studies Marital Status Medicaid Medical Mental Health Methodology Methods Minority National Institute of Dental and Craniofacial Research Operative Surgical Procedures Outcome Outcome Measure Outcomes Research Palate Perception Personal Satisfaction Populations at Risk Predictive Factor Problem behavior Prospective Studies Psychosocial Assessment and Care Publishing Quality of life Race Registries Research Personnel Risk Risk Factors Sample Size Sampling Services Single Parent Site Social Problems Social support Speech Standardization Stress Surveys Time Variant base care outcomes cleft lip and palate clinical care cohort comorbidity contextual factors cost cost estimate craniofacial design effective intervention ethnic diversity evidence base experience feeding health related quality of life improved improved outcome infancy innovation optimism orofacial cleft palate repair physical conditioning postnatal prospective protective factors psychosocial racial and ethnic racial diversity social treatment guidelines

项目摘要

PROJECT SUMMARY/ABSTRACT Orofacial clefts are among the most common congenital conditions in the U.S., occurring in approximately one in every 800 births. Children with cleft palate with or without cleft lip (CP±L) require interdisciplinary care from infancy through adulthood to improve speech, facial appearance, and physical and psychosocial health. Cleft- related treatments are burdensome for affected children and their families, and lifetime healthcare costs are estimated at nearly $700 million U.S. dollars annually. Treatment guidelines for children CP± L are primarily based on clinical expertise and provide wide latitude in the types and timing of assessments and interventions. Although the American Cleft Palate-Craniofacial Association recommends that all cleft teams include a psychosocial professional to address the mental health, quality of life, emotional, behavioral, and social needs of children with CP±L, the types of services vary greatly across centers. In addition, it remains unknown which children with CP±L are at greatest risk for poor health and psychosocial outcomes and which demographic (e.g., race), medical (e.g., cleft type, timing of diagnosis) and contextual factors (e.g., caregiver stress) contribute to these risks. Consequently, there is limited evidence to inform the provision of timely and effective interventions to support the long-term mental and physical health of children with CP±L and their families. This project will address this gap by partnering with The Cleft Palate Registry/Research Outcomes Network (CORNET; NIDCR R01DE02749). CORNET is the largest U.S. prospective study in cleft care to date and focuses on surgical and speech outcomes (pre-palate repair through 3 years of age) in a cohort of infants (N = 1514) with CP±L across 16 geographically diverse cleft centers. Leveraging CORNET and an interdisciplinary team of investigators with expertise in cleft care outcomes, we propose to evaluate psychosocial and health outcomes in young children with CP±L and their caregivers through two new studies: 1) a cross-sectional study [N = 500] of medical and demographic factors predictive of health and psychosocial outcomes; and 2) a longitudinal, mixed methods study [N = 200] to evaluate contextual predictors of psychosocial and health outcomes over time. Specific aims include: 1) examine associations between medical and demographic factors and health (growth/BMI) and psychosocial outcomes (child health-related quality of life, adjustment) in children ages 2-5 years enrolled in CORNET; 2) prospectively assess the impact of contextual risk and protective factors on health and psychosocial outcomes over time (at baseline/pre-palate surgery, 24 months, and 36 months of age); and 3) qualitatively evaluate caregiver perceptions of health and psychosocial outcomes and treatment experiences over time through narrative interviews with 40 caregivers. Data from this study will elucidate early predictors of poor and optimal outcome trajectories and inform both the type and timing of interventions to ensure that all children born with CP±L achieve optimal health and well-being.

项目概要/摘要口面部裂是美国最常见的先天性疾病之一，大约发生在每 800 名新生儿中就有 1 名患有腭裂（伴有或不伴有唇裂）的儿童需要跨学科护理。从婴儿期到成年期，改善言语、面部外观以及身体和心理健康。相关治疗对于受影响的儿童及其家庭来说是负担，并且终生医疗费用很高估计每年花费近 7 亿美元用于儿童 CP±L 的治疗指南。基于临床专业知识，并在评估和干预的类型和时间安排上提供广泛的自由度。尽管美国唇腭裂-颅面协会建议所有唇腭裂团队都应包括一名心理社会专业人员解决心理健康、生活质量、情感、行为和社会需求对于患有 CP±L 的儿童，不同中心的服务类型差异很大，此外，尚不清楚是哪些中心。患有 CP±L 的儿童健康状况不佳和心理社会结果不佳的风险最大，并且人口特征（例如种族）、医疗（例如唇裂类型、诊断时间）和背景因素（例如护理人员压力）对于这些风险的贡献，目前还没有足够的证据来及时有效地提供信息。支持 CP±L 儿童及其家人长期身心健康的干预措施。项目将通过与裂腭登记/研究成果网络合作来解决这一差距（CORNET；NIDCR R01DE02749） CORNET 是迄今为止美国最大的唇腭裂护理前瞻性研究。重点关注一组婴儿的手术和言语结果（腭前修复至 3 岁）（N = 1514）利用 CORNET 和跨学科，在 16 个不同地理位置的唇裂中心开展 CP±L 合作。由具有唇裂护理结果专业知识的研究人员团队组成，我们建议评估社会心理和健康状况通过两项新研究，了解 CP±L 幼儿及其照顾者的结果：1) 横断面研究 [N = 500] 预测健康和社会心理结果的医学和人口因素；以及 2) 纵向、混合方法研究 [N = 200] 评估心理社会和健康的背景预测因素随着时间的推移的结果。具体目标包括：1）检查医学和人口因素之间的关联。儿童的健康（生长/BMI）和社会心理结果（与儿童健康相关的生活质量、调整）参加 CORNET 的 2-5 岁儿童；2) 前瞻性评估背景风险和保护措施的影响随着时间的推移影响健康和心理社会结果的因素（基线/腭手术前、24 个月和 36 个月）月龄）；3) 定性评估护理人员对健康和心理社会结果的看法；通过对 40 名护理人员进行叙述性访谈，我们将了解一段时间内的治疗经历。阐明不良和最佳结果轨迹的早期预测因素，并告知治疗的类型和时间采取干预措施，确保所有出生时患有 CP±L 的儿童获得最佳的健康和福祉。