Abstracts

Rationale: Project CARE is a HRSA funded intervention program for pediatric epilepsy patients and their families. Transition and Care Coordination (Medical Home) are two of the six foci of the program. Methods: : As part of Project CARE, a Transition Clinic and a patient-centered medical home were established for pediatric epilepsy patients. In the Transition Clinic 42 patients were seen; of those 26 parents and 26 CYE completed transition measures. In the medical home, or Care Coordination Clinic, 454 patients were seen. Of those patients, 75 agreed to complete measure with 63 parent completions. Measures included a Transition Readiness Analysis Questionnaire (TRAQ), and The Measure of Processes of Care (MPOC-20). Patients ranged between 14 to 21 years of age. Most of the patients were female (63%) and 37% were male. Measures: The Transition Readiness Analysis Questionnaire (TRAQ) provides an opportunity to indicate the readiness of youth to assume tasks associated with management of own medical care. The Measure of Processes of Care (MPOC-20) shows the degree to which parents and CYE perceive care to be family-centered, coordinated and communicated well across providers. For the TRAQ, the categories of response are: (a) yes, I do this; (b) I want to do this; (c) I need to learn how; (d) Someone else will have to do this. Parent and youth results were compared on estimates of youth capacity. For the MPOC-20, parents complete a Likert-type scaling ranging from 1 (Not at all) to 7 (To a very great extent) to assess the following 5 scales: Enabling and partnership; Providing general information; Providing specific information; Coordinated and Comprehensive care; and Respectful and supportive care. Results: With the application of the TRAQ, considering parents and youth separately and looking at percentages that endorsed each category of response, youth appear to rate themselves both more confident and more capable on questions assessing Knowledge of Health Issues/ Diagnosis and Being Prepared. However, fewer youth report being able to Take Charge of tasks related to health care decisions. The MPOC-20 results for the present sample compare favorably with norms developed in studies of youth with neurodevelopmental conditions. All five scales are within one standard deviation of the normative sample. Parents in Project CARE responded that medical home activities were implemented "to a fairly great extent". Conclusions: : These assessments provide information about parent and youth estimations of CYE capability to perform tasks related to transition of care, from pediatric to adult epilepsy, and care coordination in a medical home. While TRAQ shows, that youth may rate their abilities higher than parents do on knowing about health issues and diagnosis, and being prepared, youth indicate that they are less prepared to take charge of their health care needs, and in many cases do not expect that they will be able to assume those tasks. With the implementation of Project CARE, both parents and CYE affirmed that care coordination assimilated with the normative studies. Funding: This project was funded by HRSA - Grant H98MC26260