Mishra Kirtisudha, Ramachandran Smita, Firdaus Saima, Rath Bimbadhar
Department of Pediatrics, Kalawati Saran Childrens' Hospital, Lady Hardinge Medical College, New Delhi, India.
Saudi J Kidney Dis Transpl. 2015 Mar;26(2):285-92. doi: 10.4103/1319-2442.152420.
The multi-dimensional impact on the quality of life (QOL) of families of children with the nephrotic syndrome (NS) has not been studied sufficiently in the literature. We aimed to study this aspect and the predictors of poor QOL among Indian families having children with NS. A cross-sectional study was conducted to compare the parents of children with chronic NS on treatment for at least one year with parents of a matched healthy control group. The parents of both groups were asked to complete the standard self-administered multi-dimensional questionnaire of Pediatric Quality of Life Inventory 4 (PedsQL TM ) Family Impact Module (FIM). Descriptive and analytical statistics were performed to compare scores between the two groups. Possible predictors of poor outcome in each of the summary scales among the cases were assessed by both univariate and multivariate analysis. The parents of 61 cases and 72 controls completed the PedsQL TM FIM questionnaire. The scores in each of the categories, namely FIM Total Scale Score, Parent HRQOL Summary Score, Family Functioning Summary Score and eight individual domains, were found to be significantly higher among controls. Female gender of the affected child was an independent risk factor for poor Family Functioning Summary Score. Also, presence of serious complications during the course of the disease independently predicted poor Total FIM and Parent HRQOL Summary Scores. Even a relatively benign and potentially curable chronic disorder in children, like the NS, can disturb the QOL of parents in multiple domains of functioning.
肾病综合征(NS)患儿家庭生活质量(QOL)受到的多维度影响在文献中尚未得到充分研究。我们旨在研究这一方面以及印度NS患儿家庭中生活质量差的预测因素。进行了一项横断面研究,将接受至少一年治疗的慢性NS患儿的父母与匹配的健康对照组的父母进行比较。两组父母均被要求完成儿科生活质量量表4(PedsQL TM)家庭影响模块(FIM)的标准自填式多维度问卷。进行描述性和分析性统计以比较两组得分。通过单因素和多因素分析评估病例中每个总结量表不良结局的可能预测因素。61例病例的父母和72名对照完成了PedsQL TM FIM问卷。发现对照组在每个类别中的得分,即FIM总分、父母健康相关生活质量总结得分、家庭功能总结得分以及八个个体领域,均显著更高。患病儿童的女性性别是家庭功能总结得分低的独立危险因素。此外,疾病过程中出现严重并发症独立预测FIM总分和父母健康相关生活质量总结得分低。即使是儿童中相对良性且可能治愈的慢性疾病,如NS,也会在多个功能领域干扰父母的生活质量。