Abstract

To evaluate the reliability of the translation and cultural adaptation of the Pediatric Quality of Life Inventory (PedsQLTM) - End Stage Renal Disease (ESRD) - version 3.0 - children/adolescents and parents reports in Brazilian children with ESRD. A group of 24 children and adolescents with ESRD, followed at Unidade de Nefrologia Pediátrica do Instituto da Criança - HCFMUSP and 32 primary caregivers were interviewed according to the me methodology proposed by the creator of the original questionnaire. Statistical analysis using Cronbach's alpha resulted in values between 0.39 and 0.89 for all domains in initial statistical analysis. The domains that presented values lower than 0.5 were recalculated by age group, resulting in higher Cronbach's alpha values demonstrating the influence of the age in the perception of quality of life in ESRD patients. The overall rating of Cronbach's alpha values resulted in values of 0.81 and 0.71 in patients and PC reports, respectively, demonstrating good internal consistency. Ours results show that the Brazilian version of the questionnaires is valid, reliable and useful for measure HRQoL of children and adolescents ESRD, according to patients and PC reports.

Highlights

  • The incidence and prevalence of end-stage renal disease (ESRD) in children have increased

  • The disease in children is based on congenital causes, with two thirds of the cases stemming from urinary system anomalies or inherited kidney disease

  • This paper aims to present the outcomes of the calculations carried out as part of the validation process of the Brazilian Portuguese version of the Peds QLTM 3.0 ESRD Module used to assess the quality of life (QoL) of children and adolescents with ESRD

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Summary

Introduction

The incidence and prevalence of end-stage renal disease (ESRD) in children have increased. In 2008, the median global incidence of renal replacement therapy (RRT) in children and adolescents aged between zero and 19 years was four per million and 18 per million age-related population respectively, while prevalence ranged from 18 to 100 per million age-related population. ESRD is characterized by irreversible loss of renal function and decline in glomerular filtration rate to levels below 29 ml/min/1.73 m2, followed by impairment of regulatory, excretory and endocrine function. The etiology of pediatric ESRD presents unique characteristics when compared to the disease in adults. Hypertension, obesity, and low birth weight rank among potential risk factors for the development of renal disease.[1,2,3,4,5,6]

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