Whose quality of life is it anyway? Discrepancies between youth and parent health-related quality of life ratings in type 1 and type 2 diabetes

Abstract

Purpose Health-related quality of life (HRQOL) is a critical diabetes outcome, yet differences between youth and parent-proxy ratings can make interpretation difficult. This study aims to explore potential differences between self- and parent-reports of Pediatric Quality of Life Inventory (PedsQL) scores from youth with type 1 (T1D) or type 2 diabetes (T2D) and to evaluate associations between discrepancies, PedsQL scores, and glycemic control (HbA1c). Methods Youth and parents in the SEARCH for Diabetes in Youth Study (T1D: age 5–18, n = 3402; T2D: age 8–18, n = 353) completed the PedsQL Generic and Diabetes Modules, and youth provided a blood sample to assess HbA1c. Discrepancies (youth minus parent PedsQL ratings) were calculated and examined by age and diabetes type, and associations with youth PedsQL scores and HbA1c were evaluated. Results Discrepancies existed between youth and parent-proxy reports of generic and diabetes PedsQL scores in T1D and T2D (all p values < 0.01). Higher (more favorable) ratings were reported by youth except for those 5–7-years old, where parents’ scores were higher. When parent-proxy scores were higher, discrepancies were largest when the child reported low PedsQL scores. Higher HbA1c was associated with larger discrepancies (youth scores higher) for adolescents with T1D. Conclusions Discrepant PedsQL ratings suggest that parents may often underestimate youths’ HRQOL except in the youngest children. Although examining both reports is optimal, the youth report should be prioritized, particularly for young children with T1D and for adolescents with either T1D or T2D.

Longitudinal quality of life improvement in underserved rural youth with obesity

“…Parent evaluations of the child's HRQoL were also analyzed, with no significant difference between child and parent reports. These values are not displayed here as they are similar to those reported in previous studies (21,23,40).…”

Health-related quality of life in children with juvenile idiopathic arthritis – child’s and parent’s point of view

“…The question is, whose assessment is more credible, the child’s or parent’s, and whose assessment should the physician trust? Some authors incline towards greater consideration of the child’s assessment because of the subjectivity of QoL assessment [27, 28]. It is, however, worth noting that the analysed parameters, such as pain or mood, are by definition subjective.…”

ISPAD Clinical Practice Consensus Guidelines 2018: Psychological care of children and adolescents with type 1 diabetes

“…In general, children with diabetes rate their own quality of life as similar to their healthy peers . However, parents tend to rate their child's quality of life somewhat lower, except for those who are 5 to 7 years of age . Boys tend to report better quality of life as well as youth with longer diabetes duration and those from a better socio‐economic background .…”

“…However, parents tend to rate their child's quality of life somewhat lower, except for those who are 5 to 7 years of age . Boys tend to report better quality of life as well as youth with longer diabetes duration and those from a better socio‐economic background . Lower quality of life seems associated with psychiatric disorders, especially depression and anxiety and a negative family environment, especially diabetes conflicts .…”