Abstracts

Rationale: Healthcare transition is an important process for all adolescents and is an important part of care for pediatric providers. For adolescents with neurodevelopmental disorders (NDD) and epilepsy, the process of transition is more complex, and requires coordination between hospital and community-based entities. We report on a group training intervention for caregivers of adolescents to support transition.


Methods: A group workshop was designed for caregivers of patients with NDD. Recruitment of participants was through multiple channels across all medical specialty programs, focusing on caregivers of patients with NDD between the ages of 14 and 18. Registrants were given the opportunity to submit questions in advance to be addressed at the workshop. Workshop includes a didactic presentation by a neuropsychologist, a panel presentation, and a parent and patient presentation. The panel included a physician, social worker, as well as professionals from community and state agencies. Pre-tests were administered to participants assessing knowledge, confidence, and comfort with aspects of transition as well if families had discussed aspects of transition with providers or had begun process of transition and if any barriers were encountered. Post-test measured changes in knowledge, confidence, and comfort with aspects of transition as well as overall satisfaction with training.


Results: 165 patients completed enough of the pre/post-test measures to be included in the analyses. Prior to the training, only 44.7% of responders indicated a provider had spoken with them about transition, 60.5% reported they had begun to prepare for transition, and 53.9% had already encountered a barrier to transition.

Following the program, participants indicated a statistically significant improvement in knowledge; a Wilcoxon Sign-Rank test indicated that median post-test ranks were statistically significantly higher than pre-test ranks for transition related knowledge (Z=-9.04, p< .001), confidence in their ability (Z=-8.53, p< .00), and comfort with transition related topics (Z=-8.854, p< .001).Of the participants completing the post-test, 100% reported they were glad they attended (n=147), 100% said they would recommend the program to others (n=147), and we met the expectations of 99.3% (n=144).


Conclusions: Caregivers reported a statistically significant improvement related to confidence, knowledge, and comfort with concepts of transition. For those with completed pre/post data, the group model proved an effective method of training on transition related issues. Overall satisfaction was rated as high. Trainings have increased access and may prove to be an effective cost containment intervention. Programs with high rates of NDD including Epilepsy, Neurology, Cerebral Palsy, and Autism were among the highest participants.

Funding: none