颅面畸形患儿的健康相关生活质量

Health-related quality of life in children with craniofacial anomalies.

作者信息

Warschausky Seth, Kay Joshua B, Buchman Steven, Halberg Andy, Berger Mary

机构信息

Department of Physical Medicine and Rehabilitation, Craniofacial Anomalies Program, University of Michigan Health Systems, Ann Arbor 48109-0718, USA.

出版信息

Plast Reconstr Surg. 2002 Aug;110(2):409-14; discussion 415-6. doi: 10.1097/00006534-200208000-00004.

Abstract

The purpose of this study was to examine parents' perceptions of the health and health-related quality of life in a series of children and adolescents with cleft and other craniofacial anomalies. The subjects for this prospective study were a consecutive series of 54 children and adolescents presenting to an outpatient craniofacial anomalies surgery clinic, ages 5 to 18 years (mean, 8.9 +/- 4.2 years), 50 percent with cleft lip and/or palate, 9 percent synostotic (two coronal, two bicoronal, and one sagittal), 17 percent syndromic (two Apert, one Crouzon, one Noonan, two Goldenhar, two Smith-Lemli-Opitz, and one brachio-oto-renal), and 24 percent with other diagnoses. Subjects were divided into two groups, those with primary cleft lip and/or palate and those with other craniofacial anomalies. Health and health-related quality of life were assessed with the Child Health Questionnaire version PF28, a reliable and valid 28-Likert-item questionnaire completed by parents and yielding physical and psychosocial status scale scores. Physical and psychosocial scale scores largely fell within normal limits for the subset of children with cleft lip and/or palate. There were significant group differences in parents' ratings of global health status, with greater health concerns noted in the non-cleft lip and/or palate group. There were no significant associations between either age or sex and physical or psychosocial health. Physical health, behavior, and psychological status were highly correlated. Using a health status and quality-of-life assessment instrument, findings indicate perceived health differences between groups with and without primary cleft lip and/or palate. In contrast to normative data with the Child Health Questionnaire, findings suggest that there is a significant association between perceived physical health and psychosocial adjustment in the population of children with craniofacial anomalies. The significant perceived health needs of the non-cleft lip and/or palate group and the association between physical health and psychological adjustment highlight the importance of the interdisciplinary nature of craniofacial teams.

摘要

本研究的目的是调查一系列患有唇腭裂及其他颅面畸形的儿童和青少年的父母对其健康状况及与健康相关的生活质量的看法。这项前瞻性研究的对象是连续54名前来门诊颅面畸形外科诊所就诊的儿童和青少年,年龄在5至18岁之间(平均年龄8.9±4.2岁),其中50%患有唇裂和/或腭裂,9%为颅缝早闭(2例冠状缝、2例双冠状缝和1例矢状缝),17%为综合征性(2例Apert综合征、1例克鲁宗综合征、1例努南综合征、2例眼耳脊椎综合征、2例史密斯-利姆利-奥皮茨综合征和1例臂-耳-肾综合征),24%为其他诊断。研究对象被分为两组,即原发性唇裂和/或腭裂患者组以及其他颅面畸形患者组。使用儿童健康问卷PF28版对健康状况及与健康相关的生活质量进行评估,这是一份由父母填写的可靠且有效的28项李克特量表问卷,可得出身体和心理社会状况量表得分。唇裂和/或腭裂儿童亚组的身体和心理社会量表得分大多在正常范围内。父母对总体健康状况的评分存在显著的组间差异,非唇裂和/或腭裂组对健康问题的担忧更多。年龄或性别与身体或心理社会健康之间均无显著关联。身体健康、行为和心理状态高度相关。使用健康状况和生活质量评估工具,研究结果表明,原发性唇裂和/或腭裂患者组与非患者组之间在感知健康方面存在差异。与儿童健康问卷的标准数据相比,研究结果表明,在颅面畸形儿童群体中,感知到的身体健康与心理社会适应之间存在显著关联。非唇裂和/或腭裂组明显的健康需求以及身体健康与心理调适之间的关联凸显了颅面团队跨学科性质的重要性。

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