Health-related quality of life in 4-to-6-year-old children with type 1 diabetes mellitus estimated by children and their mothers

Administration of pediatric Health Related Quality of Life (HRQoL) inventories frequently assesses both the child and parent perspectives in young children with type 1 diabetes mellitus (T1DM), but parent-proxy and child self-reports may differ, and little is known on these discrepancies. The aim is to evaluate HRQoL estimated by young children with T1DM and by their mothers, potential discrepancies in the children-maternal estimates and the factors influencing these discrepancies. Thirty-five 4-to-6-year-old children (19 boys) with T1DM admitted to the Pediatric Endocrinology Department were approached with the self-report KINDL questionnaire for children aged 4–6 years (Kiddy-KINDL for children). Their mothers were approached with the parental version (Kiddy-KINDL for parents). Both versions enable measuring child HRQoL in physical, emotional wellbeing, self-esteem, family, friends, everyday functioning, and the disease dimensions, as well as KINDL total on a 0–100 scale. Statistically significant differences were found between children’s and maternal estimates on the KINDL total and “Disease” scales, in that the maternal proxy-reports produced lower values. A statistically significant difference between self- and proxy-reports was found for the KINDL “Emotional wellbeing” scale values, and the maternal proxy-reports yielded higher estimates compared with children’s self-reports. These associations remained significant after adjustment for major potential confounders. Maternal education, maternal marital status, insulin regimen, and achievement of glycemic control modified the effect of child-maternal discrepancies. Conclusion: Attempts should be made to improve parental understanding of child problems related to his/her disease with due account to individual family social and demographic characteristics. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00431-021-04239-0.