Parent perceptions of their child's cognitive impairment linked to their views on support for healthcare transition

Transitioning from pediatric to adult health care can be especially challenging for children and youth with epilepsy (CYE), particularly when cognitive deficits are present. Parent perceptions of their child's cognitive abilities may influence how they engage with healthcare providers and whether they pursue recommended transition supports. This study examined associations between parent-reported cognitive impairment and experiences with healthcare transition. Using survey data collected from 66 parents of CYE aged 12-18 across multiple clinical sites, we analyzed ratings of provider interactions, recall of transition-related guidance, and concerns about the child managing their own health. Cognitive impairment was categorized by parent report as severe, mild/slight, or none. Results showed that parents reporting their child had mild/slight or severe impairment were less likely to recall receiving transition planning support than those reporting no impairment. Parents in the mild/slight group also gave lower ratings of provider communication and involvement. Open-ended responses revealed variation in expectations for youth self-management that did not always align with reported impairment levels. These findings suggest that parent perceptions play a critical role in shaping transition experiences. Addressing these perceptions through assessment, education, and individualized planning may improve the effectiveness of transition support for CYE with cognitive challenges. PLAIN LANGUAGE SUMMARY: We asked parents of youth with epilepsy how much their child's doctors helped prepare them for adult care. Parents who described their child as having mild or severe cognitive problems were less likely to feel supported in this transition. Some parents also had different perceptions about what their child could manage on their own. Our findings suggest that families may need more help and clearer communication from healthcare teams to support the transition to adult care.