Abstracts

Rationale: Transfer from paediatric to adult health care is often required for adolescents diagnosed with epilepsy in childhood. Evidence is mounting that transition, a planned process that prepares adolescents and their families for transfer, results in better long-term patient outcomes than transfer. Assessing transition readiness is important to guide health care and evaluate transition programs. While there is increasing concern among clinicians and researchers that current practice of transfer is not sufficient, the extent of transition readiness of AYAs diagnosed with epilepsy in childhood has not been formally assessed. This research had three objectives: 1. to quantify the transition readiness of AYAs with epilepsy 2. to investigate the relationships of individual and familial factors with transition readiness 3. to describe the experience of transition for AYAs with epilepsy and their parents. Methods: As part of a prospective multi-centre cohort study, families enrolled in the Health-Related Quality of Life in Children with Epilepsy Study (HERQULES) were followed for ten years after their children were diagnosed. Data were collected from parents using mailed questionnaires and AYAs using mailed or online questionnaires. The AYAs are now aged 13 to 24. AYA-report of transition readiness was measured using the Transition-Q with scores ranging from 0 to 100. This measure has previously been demonstrated to be valid and reliable. Both parents and AYAs answered questions about transition experiences documenting, for example, what they did and not like about their transfer or transition experience. Information on individual and family factors such as time since last seizure, depressive symptoms in AYAs, and family demands was collected from parent, physician, and AYA report. Mean scores for transition readiness were calculated and accounts of transition experiences reviewed for common themes. Exploratory multivariable regression analyses were conducted to assess the relationships of individual and familial factors with transition readiness. Results: Return rates for parents and AYAs were 79% (n=169) and 73% (n=129), respectively. Preliminary analysis indicates that 17% of AYAs have transferred to adult care, 8% still see a paediatric neurologist, and 63% no longer see a physician for epilepsy care. Mean Transition-Q scores for these sub-groups were 64, 53, and 68 respectively. 30% of AYAs are currently taking anti-epileptic drugs and 60% have not had a seizure in over five years. Reports of transition experiences vary widely across the samples of parents and AYAs. Descriptions of individual and familial factors and results of the multivariable regression will be reported. Conclusions: This is one of the first reports on the extent of transition readiness in AYAs with epilepsy using a psychometrically sound scale. The results will help to inform further development of transition programs for AYAs with epilepsy as an essential step in achieving better long-term outcomes for people with epilepsy. Funding: Children's Health Research Institute Graduate Research Fellowship (Dasiewicz), Canadian Institutes for Health Research Grant MOP-64311 Speechley et al.)