Rüth Eva-Maria, Landolt Markus A, Neuhaus Thomas J, Kemper Markus J
Department of Pediatric Nephrology and Department of Psychiatry and Psychosomatics, University Children's Hospital Zurich, Zurich, Switzerland.
J Pediatr. 2004 Dec;145(6):778-83. doi: 10.1016/j.jpeds.2004.08.022.
To evaluate quality of life (QOL) and psychosocial adjustment by standardized tests in well-characterized patients with steroid-sensitive nephrotic syndrome.
Forty-five patients were investigated at a median age of 9.8 years (range, 3.4 to 19.8) and 5.9 years (range, 0.1 to 16.3) since diagnosis. Child- and parent-rated QOL was evaluated by the The Netherlands Organization for Applied Scientific Research Academical Medical Center (TNO-AZL) Child Quality of life Questionnaire. Psychosocial adjustment was assessed by the Child Behavior Checklist and the Teacher Report Form.
In patients, only the QOL subscale "social functioning" was impaired compared with that in control subjects, whereas parents rated 4 of a total of 7 subscales as abnormal. Psychosocial adjustment was impaired at home and at school. Steroid dependency and cytotoxic treatment had a significant negative impact on QOL only, whereas family climate, especially maternal distress, negatively affected both QOL and psychosocial adjustment.
QOL and psychosocial adjustment are impaired in steroid-sensitive nephrotic syndrome. Both illness-related variables and family climate play an important role.
通过标准化测试评估特征明确的激素敏感性肾病综合征患者的生活质量(QOL)和心理社会适应情况。
对45例患者进行调查,自诊断以来的中位年龄为9.8岁(范围3.4至19.8岁),病程5.9年(范围0.1至16.3年)。采用荷兰应用科学研究组织学术医学中心(TNO-AZL)儿童生活质量问卷评估儿童和家长评定的生活质量。通过儿童行为检查表和教师报告表评估心理社会适应情况。
与对照组相比,患者仅生活质量量表中的“社会功能”受损,而家长评定7个总量表中的4个为异常。家庭和学校中的心理社会适应均受损。激素依赖和细胞毒性治疗仅对生活质量有显著负面影响,而家庭氛围,尤其是母亲的苦恼,对生活质量和心理社会适应均有负面影响。
激素敏感性肾病综合征患者的生活质量和心理社会适应受损。疾病相关变量和家庭氛围均起重要作用。