Nephrotic syndrome (NS) is a common chronic kidney disease in children, and has a long treatment cycle with being prone to recurrence and refractoriness. Adverse effects caused by therapeutic drugs and concerns about disease prognosis may all affect the child's physical and mental health, and quality of life. Therefore, it is very necessary to understand the Health-related Quality of Life (HRQOL) of children with nephrotic syndrome.

To understand the level of HRQOL in children with nephrotic syndrome.

Children (aged 2-18 years) with nephrotic syndrome and their parents were recruited from the Department of Pediatric Nephrology Rheumatism and Immunology, Shengjing Hospital of China Medical University between October 2019 and December 2020. Data were collected on age, gender, disease duration, whether they had frequent relapses, number of relapses, and whether they were prescribed immunosuppressive agents (including cyclophosphamide, tacrolimus, etc.) , place of residence (urban, rural, urban-rural junction areas) . The PedsQL 4.0 core generic scale was used to understand the level of HRQOL (including the child self rating scale and parent report) in children with primary NS.

A total of 183 questionnaires were distributed, and 174 valid questionnaires were returned, with an effective recovery rate of 95.1%. Among the 174 children, 119 were males and 55 were females. Median age was 6 (4, 11) years. There were 100 children with recurrence (57.5%) , with a median number of 3 (1, 5) recurrences. 54 patients had frequent recurrences and 46 patients had non frequent recurrences. 31 patients were treated with immunosuppressants. The usual place of residence was urban in 86 patients, rural in 63 patients, and urban-rural junctions in 25 patients. The ICC of the concordance analysis between the children's self-rating scale and the parent-reported scale were both greater than 0.75. There were no significant differences in physiological scores, emotional scores, social scores, role scores and total scores between genders (P>0.05) . There were statistically significant differences in physiological scores, emotional scores, social scores and total scores among different ages (P<0.05) . However, there was no significant difference in the role scores at different ages (P>0.05) . There were no significant differences in the physiological scores, emotional scores, social scores, role scores, and total scores among different disease durations (P>0.05) . There were no significant differences in the physiological score, emotional score, social score, role score and total score between children with and without frequent recurrence (P>0.05) . The emotional scores, social scores, and total scores were significantly different between children who used immunosuppressants and those who did not use (P<0.05) , and those who did not apply immunosuppressants achieved a higher score. There were no significant differences in the physiological scores, emotional scores, social scores, role scores and total scores among different family residing places (P>0.05) .

The scores of children with NS in physical, emotional, social, and role functioning were reduced. When treating the disease, clinicians need to focus on the children's physical, psychological and social adaptability, and intervene in time to improve their quality of life.

原发性肾病综合征是儿童常见的慢性肾脏疾病，本病治疗周期长，易出现迁延反复，治疗用药引起的不良反应、对疾病预后的担忧均可能影响到患儿的生理、心理健康及生活质量，因此了解原发性肾病综合征患儿健康相关生活质量（HRQOL）是十分必要的。

了解原发性肾病综合征患儿HRQOL的水平。

选取2019年10月至2020年12月就诊于中国医科大学附属盛京医院小儿肾脏风湿免疫科2~18岁原发性肾病综合征患儿及其父母为研究对象，收集患儿的年龄、性别、病程、是否为频繁复发、复发次数、是否应用免疫抑制剂（包括环磷酰胺、他克莫司等）、居住地（城市、农村、城乡接合部）情况，采用PedsQL 4.0核心通用量表了解原发性肾病综合征患儿HRQOL水平（包括儿童自评量表及家长报告量表）。

共发放183份问卷，回收有效问卷174份，有效回收率95.1%。174例患儿中男119例，女55例；中位年龄6（4，11）岁；复发患儿100例（57.5%），中位复发次数3（1，5）次；频繁复发54例，非频繁复发46例；应用免疫抑制剂治疗31例；常住地为城市86例，农村63例，城乡接合部25例。儿童自评量表与家长报告量表一致性分析的组内相关系数（ICC）均大于0.75。不同性别生理得分、情感得分、社会得分、角色得分、总分比较，差异无统计学意义（P>0.05）。不同年龄生理得分、情感得分、社会得分、总分比较，差异有统计学意义（P<0.05）；不同年龄角色得分比较，差异无统计学意义（P>0.05）。不同病程生理得分、情感得分、社会得分、角色得分、总分比较，差异无统计学意义（P>0.05）；频繁复发与非频繁复发患儿生理得分、情感得分、社会得分、角色得分、总分比较，差异无统计学意义（P>0.05）；应用免疫抑制剂患儿和未应用免疫抑制剂患儿情感得分、社会得分、总分得分比较，差异有统计学意义（P<0.05）。不同家庭居住地生理得分、情感得分、社会得分、角色得分、总分比较，差异无统计学意义（P>0.05）。

原发性肾病综合征患儿在生理、情感、社会及角色功能等各个维度的评分均有降低，临床医生在治疗疾病的同时，需关注患儿的生理、心理及社会适应能力，及时进行干预，以改善患儿的生活质量。