Epilepsia · 2026
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.
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Smith Mary Lou, Puka Klajdi, Widjaja Elysa
Аннотация
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.
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.