Perception of Indian parents on health-related quality of life of children during maintenance therapy of acute lymphoblastic leukemia: a comparison with siblings and healthy children.

Background: Advancements in treatment have improved the prognosis of children with acute lymphoblastic leukemia (ALL). Therefore, there is a need to explore health-related quality of life (HRQOL) in depth, specifically in maintenance therapy, where the available data are minimal. This study was conducted to assess the varied items listed in the domains of HRQOL of Children with ALL during maintenance therapy from a parent's perspective.

Methods: Forty children on the maintenance therapy of ALL, 40 siblings, and 40 healthy children were enrolled, and the HRQOL was assessed by parent proxy reports and child self-reports using PedsQL generic core 4.0 in local language.

Results: Parents significantly overrated the HRQOL of ALL patients, their siblings, and healthy children in comparison with child self-report in all domains of health. The HRQOL of children with ALL on maintenance therapy was significantly poorer than siblings and healthy children, but their ability to self-care, household work, attentiveness, and ability to do homework were not affected as per parents' reports. Parents reported that absenteeism because of sickness and hospital visits was more among children with ALL than siblings and healthy children. Children with ALL had emotional problems such as fear, anger, sleeping problems, and worries. In a social health domain, parents reported difficulty in competing among children with ALL. The HRQOL of siblings was as good as healthy children in physical, social, and school health domains as per parents' reports.

Conclusions: In our cohort, parents overrated HRQOL in all groups of children. The study identified the various items in each domain of HRQOL that were affected in children with ALL from parents' perspective; this would guide health care professionals to focus on these specific items so as to improve the overall HRQOL of children with ALL.