Factors affecting quality of life of children and adolescents with anorectal malformations or Hirschsprung disease
Factors affecting quality of life of children and adolescents with anorectal malformations or Hirschsprung disease
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DOI：
10.1097/mpg.0b013e31815ce545
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发表时间：
2008-10-01
影响因子：
2.9
通讯作者：
Aronson, Daniel C.
中科院分区：
文献类型：
--
作者：
Hartman, Esther E.;Oort, Frans J.;Aronson, Daniel C.
目的：首先，比较患有肛肠畸形或巨结肠疾病的儿童和青少年与对照组的生活质量（QL）和感知自我能力。其次，确定QL的预测因素。患者和方法：共向491例肛肠畸形或巨结肠疾病患者发送问卷，评估QL（精神、身体）、疾病特异性功能（排便相关）、感知自我能力（自尊、运动能力、学校态度）和人口统计学特征（性别、年龄）。临床特征（疾病严重程度，是否存在先天性异常）从医疗记录中提取。结果：超过50%（316.64%）的肛肠畸形或巨结肠病患者完成了问卷调查。平均而言，两组患者中的儿童和青少年报告的QL域与参照组相比没有差异。然而，标准偏差显示了相当大的个体差异，表明存在高水平QL患者和低水平QL患者。与参考组相比，两组患者中的儿童和青少年报告了所有领域的社会心理问题。女性、老年患者和患有严重疾病的患者报告的自我认知能力和整体疾病特异性功能水平较低，这反过来又预测了QL。结论：我们的研究结果应该提醒临床医生注意有QL问题风险的患者，因此可能需要额外的护理。我们的研究结果说明了全球疾病特异性功能和感知的社会心理能力对于提高这些患者的QL的重要性。
Objectives: First, to compare the quality of life (QL) and perceived self-competence of children and adolescents with anorectal malformations or Hirschsprung disease with that of reference groups. Second, to identify predictors of QL.Patients and Methods: A total of 491 patients with anorectal malformations or Hirschsprung disease were sent a questionnaire, which assessed QL (mental, physical), disease-specific functioning (defecation-related), perceived self-cornpetence (self-esteem, athletic competencies, school attitude), and demographic characteristics (sex, age). The clinical characteristics (disease severity, presence of congenital anomalies) were extracted from medical records.Results: More than 50% (316, 64%) of patients with anorectal malformations or Hirschsprung disease completed the questionnaire. On average, children and adolescents in both patient groups reported no differences in QL domains compared with the reference groups. However, standard deviations revealed considerable individual variation, indicating the presence of patients with high levels of QL as well as patients with low levels of QL. Children and adolescents in both patient groups reported psychosocial problems in all domains, compared with the reference groups. Females, older patients, and those with a severe form of the disease reported lower levels of perceived selfcompetence and global disease-specific functioning, which in turn predicted QL.Conclusions: Our results should alert clinicians to patients who are at risk for QL problems and may therefore be in need of extra care. Our findings illustrate the importance of both global disease-specific functioning and perceived psychosocial competencies for enhancing the QL of these patients.