Dissemination Perspectives in Epilepsy Self-Management: The PACES Example
Abstract number :
1.426
Submission category :
17. Public Health
Year :
2019
Submission ID :
2421419
Source :
www.aesnet.org
Presentation date :
12/7/2019 6:00:00 PM
Published date :
Nov 25, 2019, 12:14 PM
Authors :
Robert T. Fraser, UW; Erika K. Johnson, University of Washington
Rationale: The Centers for Disease Control and Prevention (CDC) has supported the development, validation, and dissemination of epilepsy self-management programs to include the Managing Epilepsy Well Network (MEWN) of collaborating university projects since 2007. The Program of Active Consumer Engagement in Self-Management (PACES) was developed at the University of Washington, based upon needs assessment data from 165 adults with epilepsy, to improve the medical and psychosocial status of those living with the disorder. Randomized controlled studies with adults indicated the program significantly improved global functioning and epilepsy self-management compared to a treatment-as-usual control condition. Methods: In the last year, PACES investigators have prioritized a dissemination strategy specifically engaging facilitator teams (e.g., epilepsy professionals and a consumer team leader) to train in program delivery. The initial target resource entities for facilitator recruitment were n=188 National Association of Epilepsy Centers and n = 59 Epilepsy Foundation of America affiliates. In April 2019, invitations for no-cost PACES facilitator/program implementation and technical assistance with surveys were sent to directors of 188 members of the National Association of Epilepsy Centers. The survey queried interest in PACES facilitator training/program implementation and if affirmative or negative, the specific reasons. Results: Preliminary responses (n=25) indicate a 50-50% positive response to facilitator training/program implementation between epileptologists and allied health staff (e.g., nurse practitioners, psychologists, social workers). Frequency of positive response categories will be presented (e.g., concern for patients' total quality of life, lack of behavioral specialists in the community, etc.) and denial of interest categories in the PACES program (e.g., lack of available staff, insufficient time to learn about epilepsy self-management, etc.). The Epilepsy Foundation of America offered their affiliates grant funding to have facilitators trained and to implement the PACES program. EF affiliate responses as to reasons for acceptance of the grant proposal are pending and will be presented as will data regarding lack of interest in the offer. Evaluation of the training provided from these affiliates will also be presented. Conclusions: A final section of this presentation will be a discussion of the issues that need to be addressed in order to sustain effective dissemination of PACES or any epilepsy self-management program and steps that UW investigators are taking in this direction as highlighted by the survey data. These include organizational concerns (e.g., actual readiness to adopt, funding capability, PACES Fidelity (not breaking program into billable segments), facilitator sustention (e.g., facilitation not part of job duties, staff/peer leader discontent with reimbursement, no planning for facilitator turnover, etc.), and sustention of training structure (e.g., central coordination/regional master trainers, maintaining technical assistance, training fees/certification maintenance, etc.). Although relatively early in the dissemination cycle, the presentation will highlight both successful strategies and prevalent challenges in this important area. Funding: This publication is a product of a Health Promotion and Disease Prevention Research Center supported by Cooperative Agreement Number U48DP003911 from the Centers for Disease Control and Prevention to the University of Washington. The findings and conclusions are those of the authors and do not necessarily represent to official position of the Centers for Disease Control and Prevention.
Public Health