HRQoL Study Among Youths With Longstanding Type 1 Diabetes
Analyzed the extent and direction of disagreement between self- and proxy-reported quality of life (QoL) and the factors associated with QoL.
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Research article overview in layman's terms.
This study looked at the difference between how youth with longstanding type 1 diabetes and their caregivers reported the youths' Quality of Life (QOL). The results showed that caregivers often overestimated or underestimated their children's QOL. It also found that when both the youth and caregiver were screened positively for depression, it contributed to the differences between how they reported the QOL.
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
Abstract
Youths With Longstanding Type 1 Diabetes
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: score50).
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 score0.5*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 [95% CI 1.10-1.52], RRUnderestimation 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 (RROverestimation 0.73 [0.60-0.89], RRUnderestimation 1.41 [1.14-1.75]).
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.
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