Abstracts

Rationale: We established the PEATC within the Washington University Pediatric Epilepsy Center at St. Louis Children’s Hospital to streamline the evaluation of children with treatment-resistant epilepsy. Prior to the opening of this clinic, there were not standardized processes for rapidly scheduling these children for clinic and then expediting any recommended testing such as an epilepsy surgery evaluation. Instead, each epileptologist used an ad hoc process to obtain and curate records, delaying scheduling of office visits and additional testing. The epileptologists were primarily responsible for care coordination throughout the surgical evaluation process. The goal of PEATC and role of the Nurse Navigator (NN) is to improve the experience for children with epilepsy and their families and to allow epileptologists to focus on patient care.

Methods: Although the framework of the PEATC NN role was established, the specific details and workflow needed to be defined. Through many meetings with PEATC epileptologists and nurses, and outreach to coordinating departments, the NN employed an iterative process to establish the workflow for the following responsibilities: directing referrals and assisting triage; scheduling; obtaining and curating records; reviewing records and preparing a summary file for use by providers prior to the patient’s visit; tracking and coordinating post-op testing and follow up visits; serving as a liaison between PEATC and the referring neurologist, serving as a liaison between PEATC and the child’s family, attending clinic and providing counseling prior to and throughout the entire evaluation and post op period to patients and families. Satisfaction Surveys were given to patients and families to capture their view of the services provided by the NN. A similar survey was given to providers to understand their utilization and satisfaction with the NN role.

Results: During two years of continuous improvement, the responsibilities and workflow were created, refined, and documented. Providers have been able to see patients more quickly and efficiently, allowing the epilepsy program to reach more children with treatment-resistant epilepsy (see Figure 1).

Providers appreciate the role of the dedicated PEATC NN as an additional resource to families, knowing that the patients’ evaluation is being tracked and followed, allowing them to focus on patient care. Satisfaction surveys given to PEATC providers showed they all use the services of the NN at least “Sometimes” and they are “Often” or “Always” able to more quickly and efficiently care for PEATC patients (Figure 2). Patients benefit from having a dedicated nurse to assist in guiding them through this complex and emotional process. Patients and families have said “I really appreciate and thank you for going above and beyond…and keeping me updated during the process,” “how grateful I am that you have been so available and gotten to know us…I feel like we had a voice without being present.”

Conclusions: The creation of a dedicated PEATC NN has been successful in recruiting patients, has satisfied the needs of patients and families as well as clinicians, and has been a valuable addition to the Epilepsy Fellowship program.

Funding: Please list any funding that was received in support of this abstract.: None.