Overestimation and underestimation of youths' health-related quality of life are associated with youth and caregiver positive screens for depression: results of a population-based study among youths with longstanding type 1 diabetes.

BACKGROUND

This study aimed to analyze the extent and direction of disagreement between self- and proxy-reported quality of life (QoL) and the factors associated with QoL overestimation and underestimation by caregivers compared with self-reports.

METHODS

This study used data from population-based questionnaire surveys conducted in 2012-2013 and 2015-2016 with 11- to 17-year-olds with a duration of type 1 diabetes of 10 years or longer and their caregivers (n = 1058). QoL in youth was assessed via 10-item KIDSCREEN (KIDSCREEN-10) self- and proxy-reported questionnaires. The scores ranged from 0 to 100, with higher scores indicating better QoL. Depression screening was performed via the Center for Epidemiological Studies Depression Scale for Children for youths (CES-DC screen positive: score > 15) and WHO-5 Well-being Index for parents/caregivers (WHO-5 screen positive: score ≤ 50).

RESULTS

The mean self- and proxy-reported normalized KIDSCREEN-10 scores were 64.2 (standard deviation [SD] 11.4) and 66.1 (11.5), respectively. More caregivers overestimated (self-reported minus proxy-reported score < - 0.5SD self-reported score) than underestimated (self-reported minus proxy-reported score > 0.5SD self-reported score) youths' QoL (37% versus 23%, p < 0.001). Youths who screened positive for depression (18%) were at higher risk of their QoL being overestimated and lower risk of their QoL being underestimated by caregivers than youths who screened negative for depression (RR 1.30 [95% CI 1.10-1.52], RR 0.27 [0.15-0.50]). Caregivers who screened positive for depression (28%) overestimated the QoL of their children less often and underestimated the QoL of their children more often than caregivers who screened negative for depression (RR 0.73 [0.60-0.89], RR 1.41 [1.14-1.75]).

CONCLUSIONS

Caregivers often over- or underestimated their children's QoL. Positive screens for depression among both youths and caregivers contributed to the observed differences between self- and caregiver-reported QoL.