Hatami H, Khodakarim S, Sotoodeh A, Nabizadeh A, Radfar R
Department of Public Health and Environmental and Occupational Research Center, School of Health, Shahid Beheshti University of Medical Science, Tehran, Iran.
Department of Epidemiology, School of Health, Shahid Beheshti University of Medical Science, Tehran, Iran.
J Med Life. 2015;8(Spec Iss 4):138-143.
The current study tried to evaluate the quality of life (QOL) of phenylketonuria (PKU) patients residing in Tehran, Iran and it also tried to determine the average quality of life of patients. Various aspects of QOL have been analyzed depending on gender, age, and educational levels of the subjects. The sample of the study consisted of late-diagnosed PKU patients who were referred to Mofid Children's Medical Center as well as to Ali-Asghar Hospitals in order to receive metabolic diets on a one year period starting from spring 2013 to spring 2014. Due to the limited study population, subjects were selected via census, therefore 82 patients were enrolled. The research material consisted of the Persian edition of World Health Organization Quality of Life questionnaire (WHOQOL-BREF), designed to examine physical, mental, social and environmental health. The data was gathered on two levels-descriptive and inferential- by using the SPSS software, V.20. Results indicated that the low quality of life in the late-diagnosed patients suffering from PKU, with mental, physical, social, and environmental aspects, was below the average. Still, even if it was not gender dependent, QOL was greatly influenced by the educational level of the patients. Moreover, it was discovered that the mental health of the patients above 40 years old was significantly lower than the other age groups. According to the findings of this study, it was recommended that special attention should be given to the improvement of the social and mental health of PKU patients.
本研究旨在评估居住在伊朗德黑兰的苯丙酮尿症(PKU)患者的生活质量(QOL),并确定患者的平均生活质量。根据受试者的性别、年龄和教育水平,对生活质量的各个方面进行了分析。研究样本包括从2013年春季到2014年春季期间转诊至莫菲德儿童医院和阿里 - 阿斯加尔医院接受为期一年代谢饮食治疗的晚发型苯丙酮尿症患者。由于研究人群有限,通过普查选取受试者,共纳入82例患者。研究材料为世界卫生组织生活质量问卷(WHOQOL - BREF)的波斯语版本,旨在检查身体、心理、社会和环境健康状况。使用SPSS软件V.20在描述性和推断性两个层面收集数据。结果表明,晚发型苯丙酮尿症患者的生活质量较低,在心理、身体、社会和环境方面均低于平均水平。此外,尽管生活质量不依赖于性别,但受患者教育水平的影响很大。而且,发现40岁以上患者的心理健康明显低于其他年龄组。根据本研究的结果,建议特别关注改善苯丙酮尿症患者的社会和心理健康状况。