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.

Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt

“…This may be due to the nature of CKD and its anticipated progression to ESRD and related premature mortality, in addition to worry about the efficacy, side effects of treatment, and comorbidities associated with CKD. This was consistent with results of studies in caregivers of children with nephrotic syndrome, one of the major causes of CKD in our children, who also reported the lowest score in worry function [28,30].…”

“…The total PedsQL™ FIM and parental HRQoL of caregivers of children with CKD was lower in our population compared with other studies of caregivers of children with other chronic diseases (asthma [26], osteogenesis imperfecta [27], sickle cell disease [8], asthma and heart diseases [3], chronic gastrointestinal disorders [2], chronic pain [7], nephrotic syndrome [28], disabilities [29], and different chronic conditions [15]).…”

Multidimensional impact on families of children with steroid‐sensitive nephrotic syndrome

“…Prior permission was taken before using the tool. The tool has already been validated in Indian children in another study . Cronbach's alpha coefficients exceeded the recommended minimum of 0.70 for the FIM total scale score and the major summary scores, demonstrating adequate homogeneity of the scale.…”

“…Mishra et al ., showed female gender of the affected child as an independent risk factor for poor Family Functioning Summary Score. Also, the presence of serious complications during the course of the disease independently predicted poor total FIM and Parent HRQoL Summary Scores …”

The effect of blended training on the quality of life of children with nephrotic syndrome

“…People with nephrotic syndrome face many problems that affect their quality of life directly,[ 5 ] including the side effects of medications and the high dependence on medical equipment for a large part of life, severe dietary intake, the unpredictability of relapse time, and frequent periods of need for hospitalization. [ 6 7 8 ] Lack of physical growth and deflection of the bones, changes in the form of the gums, hypertrichosis due to the use of corticosteroid drugs and cyclosporine and, on the other hand, edema are considered as the most common clinical signs of the disease, with other apparent changes in the face and other organs of the patient.…”