title: The impact of pediatric nephrotic syndrome on parents' health-related quality of life and family functioning: an assessment made by the PedsQL 4.0 family impact module.
abstract: 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.
authors.affiliation: Department of Pediatrics, Kalawati Saran Childrens' Hospital, Lady Hardinge Medical College, New Delhi, India.
authors.forename: Kirtisudha
authors.initials: K
authors.lastname: Mishra
authors.forename: Smita
authors.initials: S
authors.lastname: Ramachandran
authors.forename: Saima
authors.initials: S
authors.lastname: Firdaus
authors.forename: Bimbadhar
authors.initials: B
authors.lastname: Rath
mesh_terms: D016022:Case-Control Studies; D002648:Child; D002652:Child Behavior; D002675:Child, Preschool; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D005195:Family Relations; D005260:Female; D006801:Humans; D007194:India; D008297:Male; D009404:Nephrotic Syndrome / Q000150:complications / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D010290:Parents / Q000523:psychology*; D011788:Quality of Life; D012008:Recurrence; D012074:Remission Induction; D012307:Risk Factors; D012737:Sex Factors; D011795:Surveys and Questionnaires; D013997:Time Factors; D016896:Treatment Outcome