Grano Caterina, Aminoff Dalia, Lucidi Fabio, Violani Cristiano
Department of Psychology, Sapienza University of Rome, 00185 Rome, Italy.
Pediatr Surg Int. 2010 Feb;26(2):151-5.
The aim of the present study was to analyze disease-specific quality of life, as assessed by the Hirsch-sprung Disease/Anorectal Malformation Quality of Life (HAQL) questionnaire, in children and adults with ano-rectal malformations (ARM).
As much as 175 children and 62 adults who were members of the Italian Association for Anorectal Malformations were asked to complete the Italian version of the HAQL questionnaire developed for this study. For children under 16 years of age, mothers were asked to fill up the questionnaires. Patients were also asked to identify their type of malformation from a list of eight choices.
Most subscales of the Italian HAQL had acceptable reliability. Compared to children, adults reported significantly lower levels of QL on subscales measuring emotional functioning, body image, and physical symptoms.
Longitudinal studies are needed to clarify whether these results can be attributed to improvements in surgical techniques that have contributed to improved QL in younger cohorts, or if, instead, quality of life in patients with ARM decreases over time. Intervention efforts should focus on bowel management and psychological treatment for ARM-related emotional and body image distress.
本研究旨在分析采用先天性巨结肠症/肛门直肠畸形生活质量（HAQL）问卷评估的肛门直肠畸形（ARM）儿童和成人的疾病特异性生活质量。
邀请多达175名儿童和62名成人（意大利肛门直肠畸形协会成员）完成为本研究编制的意大利语版HAQL问卷。对于16岁以下儿童，要求其母亲填写问卷。还要求患者从八种选择的列表中确定其畸形类型。
意大利语版HAQL的大多数子量表具有可接受的信度。与儿童相比，成人在测量情绪功能、身体形象和身体症状的子量表上报告的生活质量水平显著较低。
需要进行纵向研究，以阐明这些结果是否可归因于手术技术的改进，这些改进有助于改善较年轻队列的生活质量，或者相反，ARM患者的生活质量是否会随时间下降。干预措施应侧重于肠道管理以及针对与ARM相关的情绪和身体形象困扰的心理治疗。
