title: Health-related quality of life (HRQOL) in children with chronic liver disease in North East Iran using PedsQL™ 4.0.
abstract: BACKGROUND
  Health-related quality of life (HRQOL) is a concept that relates to an individual's perception of health status in relation to the culture and value systems in which they live, in addition to their expectations, goals, concerns, and living standards. Considering the size of the population affected by Chronic Liver Diseases (CLDs) and the severity and chronic nature of the symptoms, there is an emerging need to evaluate the quality of life of patients using a standard protocol. The aim of this study is to assess the HRQOL in children with CLD based on child self-report and parent proxy-report forms.
  
  
  METHODS
  A total of 164 children, 55 CLD and 109 healthy children (aged 6-17 years), upon referral from the Pediatric Department at Ghaem Hospital in Mashhad from 2010 to 2014 were enrolled in this case-control study. We used the PedsQL(TM) 4.0 generic score scale to assess the HRQOL in children with CLD compared to the control group based on child self- and parent proxy reports.
  
  
  RESULTS
  According to the child self-reports, the total HRQOL in the case group (89.93±9.63) was significantly lower than control group (93.05±9.28) (p=0.006). We found significant differences in emotional functioning based on the CLD child self-reports (p=0.001) and their parent proxy-reports (p=0.002). Furthermore, there was a statistically significant correlation between the severity and physical functioning as reported by the Child-Pugh score (p=0.03, r= -0.31) and the MELD/PELD scores (p=0.01, r= -0.35), based on child self-reports. Gender, age of onset, CLD types, duration of the disease, and treatment showed no significant differences with total HRQOL.
  
  
  CONCLUSIONS
  HRQOL is significantly lower in children with CLD in comparison to the normal population. We strongly recommend considering different aspects of quality of life, especially emotional functioning concomitant to the therapy programs.
authors.affiliation: M.D., Clinical Research Development Center, Ghaem Hospital, Mashhad University of Medical Sciences, Mashhad, Iran.
authors.forename: Shahrzad
authors.initials: S
authors.lastname: Tehranian
authors.affiliation: M.D., Department of Pediatrics, Ghaem Hospital, Mashhad University of Medical Sciences, Mashhad, Iran.
authors.forename: Seyedali
authors.initials: S
authors.lastname: Jafari
authors.affiliation: M.D., Department of Pediatrics, Islamic Azad University of Medical Sciences, Mashhad, Iran.
authors.forename: Jamshid
authors.initials: J
authors.lastname: Yousofi
authors.affiliation: M.D., Department of Pediatrics, Ghaem Hospital, Mashhad University of Medical Sciences, Mashhad, Iran.
authors.forename: Mohammadali
authors.initials: M
authors.lastname: Kiani
authors.affiliation: M.D., Department of Pediatrics, Islamic Azad University of Medical Sciences, Mashhad, Iran.
authors.forename: Saleh
authors.initials: S
authors.lastname: Seyedin
authors.affiliation: M.D., North Khorasan University of Medical Sciences, Bojnurd, Iran.
authors.forename: Ali
authors.initials: A
authors.lastname: Khakshour
authors.affiliation: M.D., Tehran University of Medical Sciences, Tehran, Iran.
authors.forename: Rita
authors.initials: R
authors.lastname: Bagherian
authors.affiliation: M.D., Mazandaran University of Medical Sciences, Sari, Iran.
authors.forename: Hasan
authors.initials: H
authors.lastname: Karami
authors.affiliation: M.D., Allergy Research Center, Ghaem Hospital, Mashhad University of Medical Sciences, Mashhad, Iran.
authors.forename: Hamidreza
authors.initials: H
authors.lastname: Kianifar
keywords: children; chronic disease; liver disease; quality of life; questionnaire