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

Abstract

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. What is Known:• HRQoL in children with T1DM has been advocated as an important complementary outcome to clinical and laboratory markers.• Self-and parental proxy-reports on HRQoL may differ, but little is known on these discrepancies and on the factors influencing them in young children with T1DM.What is New:• Mothers tend to underestimate general and disease-related components of HRQoL but likely to overestimate psychological wellbeing of their ill young children with T1DM.• Maternal education, marital status, insulin regimen, and achievement of glycemic control modify estimations of HRQoL and child-maternal discrepancies.Supplementary InformationThe online version contains supplementary material available at 10.1007/s00431-021-04239-0.