@article{766,
  keywords = {family, inter-rater reliability, parent proxy, pediatric, self-report},
  author = {Klajdi Puka and Mark Ferro and Carol Camfield and Simon Levin and Mary Smith and Samuel Wiebe and Guangyong Zou and Kathy Speechley},
  title = {Self-reported quality of life and degree of youth-parent agreement: A long-term follow-up of childhood-onset epilepsy.},
  abstract = {<p><strong>OBJECTIVE: </strong>To prospectively delineate self-reported health-related quality of life (HRQOL) of adolescents and young adults (AYAs) 8 and 10 years after an epilepsy diagnosis and evaluate the degree of AYA-parent agreement in ratings of AYA{\textquoteright}s HRQOL.</p><p><strong>METHODS: </strong>Data came from the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES), a 10-year longitudinal study of children, aged 4-12\&nbsp;years, with newly diagnosed epilepsy. Epilepsy-specific HRQOL was self-reported by AYA 8 and 10 years after diagnosis and by parents at multiple time points throughout the 10-year follow-up. Measurers of HRQOL over time were analyzed using a linear mixed-effect model approach. AYA-parent agreement was evaluated using intraclass correlation coefficient (ICC) and Bland-Altman plots.</p><p><strong>RESULTS: </strong>A total of 165 AYAs participated at long-term follow-up. There was considerable heterogeneity among AYA{\textquoteright}s HRQOL, and as a group, there was no significant change in HRQOL from the 8- to 10-year follow-up. Household income at the time of diagnosis, seizure control at follow-up, and a history of emotional problems (anxiety/depression) were independent predictors of HRQOL at follow-up. AYA-parent agreement on AYA{\textquoteright}s HRQOL was moderate (ICC 0.62, 95\% CI 0.51-0.71), although considerable differences were observed at the individual level. AYA-parent agreement varied with AYA{\textquoteright}s and parent{\textquoteright}s age, seizure control, and family environment.</p><p><strong>SIGNIFICANCE: </strong>In the long-term after a diagnosis of epilepsy, AYAs report stable HRQOL over time at the group level, although notable individual differences exist. Seizure control, anxiety/depression, and family environment meaningfully impact AYA{\textquoteright}s long-term HRQOL. AYA and parent reports on HRQOL are similar at the group level, although they cannot be used interchangeably, given the large individual differences observed.</p>},
  year = {2020},
  journal = {Epilepsia},
  volume = {61},
  pages = {2254-2264},
  month = {10/2020},
  issn = {1528-1167},
  doi = {10.1111/epi.16665},
  language = {eng},
}