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 PedsQLTM 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.

Conclusion: 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.  

Keywords: chronic disease, liver disease, quality of life, children, questionnaire
 
 
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