Riaño-Galán Isolina, Málaga Serafín, Rajmil Luis, Ariceta Gema, Navarro Mercedes, Loris Cesar, Vallo Alfredo
Division of Paediatrics, Hospital San Agustín, Avilés, Spain.
Pediatr Nephrol. 2009 Aug;24(8):1561-8. doi: 10.1007/s00467-009-1175-0. Epub 2009 May 28.
The health-related quality of life (HRQOL) of adolescents with end-stage renal disease (ESRD) is an important marker of disease burden. Our aims were to investigate HRQOL in a group of children and adolescents with ESRD and to compare them with the reference population norms. Ours was a cross-sectional study of 81 patients aged 10 years to 21 years with ESRD (68 with kidney transplants and 13 on dialysis) at five Spanish paediatric nephrology centres. HRQOL was investigated with the Spanish version of the child health and illness profile, adolescent edition (CHIP-AE). Clinical variables such as underlying diagnosis, number of rejection episodes, pre-emptive transplantation, anaemia and height were also analysed. No differences were found between patients with kidney transplants and their healthy peers in any domain or sub-domain of CHIP-AE. The group on dialysis scored lower than healthy controls and patients with transplants for satisfaction with health. Discomfort was higher in patients with transplants who had suffered one rejection episode. Physical discomfort was increased in anaemic patients with transplants. Short patients scored less in the satisfaction domain, with lower self-esteem and lower satisfaction with health. Adolescents with kidney transplants had better satisfaction with health than the group on dialysis, which matched the level of a healthy population. Further long-term prospective research is warranted.
终末期肾病(ESRD)青少年的健康相关生活质量(HRQOL)是疾病负担的重要指标。我们的目的是调查一组患有ESRD的儿童和青少年的HRQOL,并将他们与参考人群标准进行比较。我们在西班牙的五个儿科肾脏病中心对81名年龄在10岁至21岁之间的ESRD患者(68名接受肾移植,13名接受透析)进行了横断面研究。使用儿童健康与疾病概况青少年版(CHIP-AE)的西班牙语版本对HRQOL进行了调查。还分析了诸如潜在诊断、排斥反应发作次数、抢先移植、贫血和身高之类的临床变量。在CHIP-AE的任何领域或子领域中,肾移植患者与其健康同龄人之间均未发现差异。透析组在对健康的满意度方面得分低于健康对照组和移植患者。经历过一次排斥反应的移植患者不适程度更高。贫血的移植患者身体不适增加。身材矮小的患者在满意度领域得分较低,自尊水平较低,对健康的满意度也较低。接受肾移植的青少年对健康的满意度高于透析组,与健康人群的水平相当。有必要进行进一步的长期前瞻性研究。