Quality of Life in Children with Cleft

唇腭裂儿童的生活质量

• 批准号: 7647038
• 负责人: HILLARY L BRODER
• 金额: $ 72.2万
• 依托单位: NEW YORK UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-08 至 2014-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7647038
• 关键词: 11 year old; 18 year old; 21 year old; Adolescent; Adult; Age; Age-Years; Anxiety; Appearance; Area; Biological; Biological Factors; Bone Transplantation; Caregivers; Caring; Child; Child Care; Child health care; Chronic; Classification; Cleaved cell; Cleft Palate; Clinical; Clinical Data; Clinical Research; Cost Control; Cross-Sectional Studies; Data; Defect; Demographic Factors; Dental; Development; Disease; Eating; Enrollment; Ethnic Origin; Ethnic group; Evaluation; Face; Family Process; Future; Goals; Habilitation; Health; Health Care Costs; Health Policy; Health Services; Health Status; Healthcare; Individual; International; Intervention; Investigation; Language; Learning Disabilities; Life; Linear Models; Link; Lip structure; Literature; Longitudinal Studies; Malocclusion; Measures; Mediating; Medical; Mental Health; Methods; Modeling; Nose; Observational Study; Odontogenesis; Operative Surgical Procedures; Oral; Oral Health Impact Profile; Oral health; Outcome; Outcome Assessment; Patient Self-Report; Patients; Perceived quality of life; Perception; Personal Satisfaction; Plastic Surgical Procedures; Population; Positioning Attribute; Process; Proxy; Psychological Factors; Publishing; Quality of life; Quality-of-Life Assessment; Recommendation; Recording of previous events; Reporting; Research; Sampling; School-Age Population; Scientist; Self Concept; Self Perception; Site; Social Class; Source; Specialist; Speech; Subgroup; Surgeon; System; Testing; Time; United States National Institutes of Health; World Health Organization; Youth; alveolar bone; base; care seeking; cleft lip and palate; clinical Diagnosis; comparison group; contextual factors; coping; craniofacial; depression; depressive symptoms; ear infection; expectation; experience; health care service utilization; health definition; health related quality of life; improved; insight; instrument; member; oral condition; palatal surgery; patient oriented; prospective; psychosocial; public health relevance; repaired; resilience; social; tool

DESCRIPTION (provided by applicant): Individuals with clefts have a myriad of special needs including speech and language problems, facial differences, atypical dental development, malocclusion, learning disabilities, chronic ear infections as well as associated psychosocial sequelae. Cleft habilitation is a lengthy process involving multiple evaluations and treatment by a team of specialists. This process is time-consuming and costly. The primary dental, speech and surgical evaluations/treatment start before age one and extend at least until 18 years of age. Many children/youth experience yearly evaluations and have secondary surgical interventions to improve their speech, appearance and dental development. The overall rationale for secondary interventions is to improve individuals' quality of life (QoL). To date, no systematic investigation has examined patient-oriented outcomes like QoL in school-aged children with cleft. This project will enroll children (ages 8-17) with cleft palate only (CPO) and cleft lip and palate and their caregivers who are evaluated at five renown craniofacial centers (two in the southeast and three in the northeast) in a large cross-sectional study (approximately 2,000). A sample of children who undergo secondary surgery (N=500) will be followed in an observational longitudinal study with evaluations at baseline, and {at one year and two years post surgery}. The surgery groups are youth: 1. receiving secondary palatal surgery for speech who have cleft lip and palate; 2. receiving secondary palatal surgery for speech who have cleft palate; 3. receiving secondary lip/nose revisions for facial appearance; and 4. receiving alveolar bone grafts for dental development. {Children who are not undergoing secondary surgical interventions will constitute two comparison groups: 1. those not receiving surgical recommendations (N=400); and those who reject the surgical recommendation (N<50)}. Data from the Children's Oral Health Impact Profile (COHIP), a recently validated culturally-relevant measure of oral health-related quality of life (OHRQoL), PedsQL, Beck's Anxiety, Depression, Self-concept Scales {and the Resilience Scales} will be collected to describe the children evaluated at baseline. These patient-oriented outcomes and psychological factors will be utilized in the longitudinal study. Additionally the interrelationships among QoL and biological (e.g., type/extent of defect), surgical history, demographic and {contextual factors} will be analyzed. Hierarchical linear modeling (HLM) will be used to detect statistically significant as well as clinically meaningful change over time. Given the disparities in health care utilization and the thrust to control costs, it is important not only to examine biological factors like type of cleft and extent of defect but {contextual factors like social class, family process}, payer source and demographic factors (i.e., ethnicity). The overall aim of the study is to improve our understanding of QoL and related issues among youth with cleft and examine clinically meaningful change in school-aged children undergoing secondary surgery. This study may provide insight into the efficaciousness of cleft habilitation with regards to improving OHRQoL and overall QoL and may identify subgroups where targeted interventions are most needed. PUBLIC HEALTH RELEVANCE: Individuals with clefts have multiple special needs including speech and language problems, facial differences, atypical dental development, malocclusion, learning disabilities, chronic ear infections as well as associated psychosocial sequelae. Although children with cleft lip and palate and cleft palate only have multiple evaluations and treatment before adulthood, it is undocumented whether these children's quality of life improves following secondary surgical interventions. The overall aim of this study is to increase our understanding of the patient-oriented outcomes like oral health-related quality of life and health-related quality of life in children between 8 and 18 years old with cleft lip and palate and cleft palate only.

描述（由申请人提供）：患有left裂的人有无数的特殊需求，包括语音和语言问题，面部差异，非典型牙齿发育，不良批判性，学习障碍，慢性耳朵感染以及相关的心理社会后遗症。 left养殖是一个漫长的过程，涉及一组专家团队进行多次评估和治疗。这个过程耗时且昂贵。主要的牙科，言语和手术评估/治疗开始于一岁之前，至少延长至18岁。许多儿童/青少年会经历年度评估，并采用继发性手术干预措施，以改善其言语，外观和牙齿发育。继发干预措施的总体原理是改善个人的生活质量（QOL）。迄今为止，尚无系统性调查检查以患者为导向的结果，例如QoL的QoL裂缝中的QOL。该项目将在一项大型横断面研究（约2,000个）中（约2,000个），将在五个著名的颅面中心（东南部有两个，东南部有两个）评估的儿童（8-17岁），只有裂口（CPO）（CPO）（CPO）（CPO）（CPO）（CPO）（CPO）（CPO）和cleft裂和他们的护理人员。在一项观察性纵向研究中，将遵循接受继发手术的儿童（n = 500）的样本，并在基线时进行评估，{手术后一年零两年}。手术组是青年：1。接受唇裂和pa裂的言语中的次要pal骨手术； 2。接受pa裂的次生pa骨手术； 3。接受次级唇/鼻子修订以进行面部外观； 4。接收牙槽骨移植以进行牙齿发育。 {未接受继发手术干预措施的儿童将构成两个比较组：1。未接受手术建议的孩子（n = 400）；以及那些拒绝手术建议（n <50）}的人。来自儿童口腔健康影响概况（COHIP）的数据是最近与口腔健康相关的生活质量（OHRQOL），PEDSQL，BECK的焦虑，抑郁，自我概念量表{和恢复能力量表}的次数验证的衡量标准的数据。这些面向患者的结果和心理因素将用于纵向研究。另外，将分析QOL和生物学之间的相互关系（例如缺陷的类型/程度），手术病史，人口统计和{上下文因素}。层次线性建模（HLM）将用于检测统计学意义和临床意义的变化。鉴于医疗保健利用的差异和控制成本的障碍，重要的是要检查生物学因素，例如裂纹类型和缺陷程度，还要检查{社会阶层，家庭过程，付款人的来源和人口统计学因素（即种族）。该研究的总体目的是提高我们对left裂青年的质量质量和相关问题的理解，并检查接受继发手术的学龄儿童的临床意义变化。这项研究可能会洞悉有关改善Ohrqol和整体质量的有效性关联的有效性，并可以在最需要有针对性的干预措施的情况下确定亚组。公共卫生相关性：患有裂缝的人有多种特殊需求，包括言语和语言问题，面部差异，非典型牙齿发展，错误咬合，学习障碍，慢性耳朵感染以及相关的心理社会后遗症。尽管唇裂，口感和left裂的儿童仅在成年前进行了多次评估和治疗，但在继发手术干预措施后，这些孩子的生活质量是否有所改善，尚无记载。这项研究的总体目的是提高我们对以患者为导向的结果的理解，例如与口腔健康相关的生活质量以及8至18岁儿童的生活质量与健康相关的生活质量，而唇cle裂，口感和left裂。