Agreement and 2‐year trajectories of youth‐ and parent‐reported health‐related quality of life in youth with epilepsy treated with surgery vs medical therapy

Objective This cohort study examined the agreement between youth‐ and parent‐reported health‐related quality of life (HRQOL) of children treated with epilepsy surgery compared to medical therapy. A second aim was to evaluate whether changes in HRQOL over 2 years differed between the two groups, and to determine whether these trajectories differed by informant (youth or parent). Methods A total of 255 youth–parent dyads participated, of whom 95 youth underwent epilepsy surgery and 160 continued medical management. Participants completed the KIDSCREEN‐27 at baseline, 6‐month, 1‐year, and 2‐year follow‐up. Youth–parent agreement was evaluated at the individual level as well as at the group level. Linear mixed models were used to evaluate changes in HRQOL over time. Results Among 255 youth, 46% were female, and ages ranged from 8 to 18 years (mean 13 years) at baseline. Most parents were female (85%) and 40–49 years of age (58%). The surgical and medical group were largely similar across baseline characteristics. Agreement across HRQOL domains ranged from fair to good intraclass correlation coefficient (ICC .32–.66). Although average youth–parent differences were small (−1 to +3 points), Bland–Altman plots showed large discrepancies, and substantial differences between dyads were frequent. Youth reported increasing Physical Well‐being and School Environment scores in the first year after surgery and remaining stable or slightly decreasing thereafter. In contrast, parent‐reported trajectories for Physical Well‐being and School Environment did not show a significant difference. For other domains—Psychological Well‐being, Autonomy and Parent Relation, and Social Support and Peers—no differences were identified across treatment groups, and findings were consistent among youth and parent reports. Significance The results emphasize the need for considering the perspective of youth as well as their parents when evaluating the outcomes of surgery or other treatments for epilepsy.