HRQoL 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 20122013 and 20152016 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: score50). Results The mean self- and proxy-reported normalized KIDSCREEN-10 scores were 64.2 (standard deviation 11.4) and 66.1 (11.5), respectively. More caregivers overestimated (self-reported minus proxy-reported score< 0.5*SD self-reported score) than underestimated (self-reported minus proxy-reported score>0.5*SD 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 (RROverestimation 1.30 , RRUnderestimation 0.27 ). 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 (RROverestimation 0.73 , RRUnderestimation 1.41 ). Conclusions Caregivers often over- or underestimated their childrens QoL. Positive screens for depression among both youths and caregivers contributed to the observed differences between self- and caregiver-reported QoL. Read the full article
