Dhooria Gurdeep S, Singh Harmeet P, Bhat Deepak, Bains Harmesh S, Soni Ravinder K, Kumar Mohit
Department of Pediatrics, Dayanand Medical College and Hospital, Ludhiana, India.
Department of Medicine, Dayanand Medical College and Hospital, Ludhiana, India.
J Paediatr Child Health. 2017 Apr;53(4):354-357. doi: 10.1111/jpc.13445. Epub 2017 Jan 6.
Children with nephrotic syndrome (NS) have prolonged disease course with relapses requiring frequent visits and prolonged steroid therapy with their long-term concerns. All these factors affect the child and their families in many domains of functioning. The objective of this study was to assess multidimensional impact on families of children with nephrotic syndrome using (PedsQL) Family Impact Module (FIM).
This cross-sectional study was conducted in a paediatric nephrology clinic of a tertiary care hospital. Fifty cases of steroid-sensitive nephrotic syndrome between age group of 2-18 years were included, and equal age-sex matched healthy children were taken as controls. Baseline demographic factors including age, gender and education status, modified Kuppuswamy's socio-economic status were collected and clinical variables of NS cases were recorded. FIM is a parent-reported instrument that measures the impact of paediatric chronic health conditions on care giver's HRQOL and their family function. Mean FIM scores were compared among the cases and controls, and different predictive factors affecting family impact (FI) were analysed.
The FI total score showed significantly lower scores in cases (mean score: 60.76 ± 15.66) as compared to controls (mean 100). Among the individual groups, lowest scores were found in two domains, namely 'worry' and 'emotional function' with mean scores of 46.20 ± 20.66 and 46.80 ± 24.61, respectively, although other domains were also significantly affected.
FI score should be evaluated in all cases of NS as parenting such children may significantly affect all domains of family functioning.
肾病综合征(NS)患儿病程迁延,复发频繁,需要频繁就诊,长期接受类固醇治疗,这些长期问题会在多个功能领域影响患儿及其家庭。本研究的目的是使用儿童生活质量量表(PedsQL)家庭影响模块(FIM)评估肾病综合征患儿家庭所受到的多维度影响。
本横断面研究在一家三级医院的儿科肾病诊所进行。纳入了50例年龄在2至18岁之间的类固醇敏感型肾病综合征患儿,并选取年龄和性别匹配的健康儿童作为对照。收集了包括年龄、性别和教育状况等基线人口统计学因素,以及改良的库普苏瓦米社会经济地位,并记录了肾病综合征患儿的临床变量。FIM是一种家长报告的工具,用于测量儿科慢性健康状况对照顾者健康相关生活质量及其家庭功能的影响。比较了病例组和对照组的FIM平均得分,并分析了影响家庭影响(FI)的不同预测因素。
与对照组(平均100分)相比,病例组的FI总分显著较低(平均得分:60.76±15.66)。在各个单独的组别中,在 “担忧” 和 “情绪功能” 这两个领域得分最低,平均得分分别为46.20±20.66和46.80±24.61,尽管其他领域也受到了显著影响。
对于所有肾病综合征患儿病例,都应评估FI得分,因为养育这类患儿可能会显著影响家庭功能的各个领域。