Authors :
Amanda Gordon, MSN, NP-C – Atrium Health Neurosciences Institute; Nicol Brandon, MPA, CCRP, CCRC – Atrium Health Neurosciences Institute; Chrisanne Barnes, MSN, RN, AGCNS – Atrium Health Carolinas Medical Center; Casey Cruse, BSN, RN, CNRN – Atrium Health Cabarrus; Amber Meadows, BSN, RN – Atrium Health Cabarrus; Ashley Moore, RN, BSN, MBA – Atrium Health Neurosciences Institute; Rajdeep Singh, MD, MS – Atrium Health Neurosciences Institute
Rationale: The Managing Epilepsy Well (MEW) Network developed various self-management programs, including Project Uplift and HOBSCOTCH. Healthcare institutions who treat large volumes of epilepsy patients are key stakeholders in the implementation of these programs. At Atrium Health, with a level 4 epilepsy center and a community-based level 3 epilepsy center, we felt to be in a unique position to implement these programs.
Methods: Our initial strategy included recruiting patients from the clinic based on a 6-item questionnaire given to each patient. The completed questionnaires were reviewed by staff and patients were contacted if deemed appropriate. This method was used to have minimal impact on the workflow of providers.
Results: We received 552 completed questionnaires over an 18-month period. The table below compares the number of patients interested versus the number of patients who started the programs and the number who completed the program. _x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
_x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
Project Uplift _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
HOBSCOTCH _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
BOTH _x000D_
_x000D_
_x000D_
|
| _x000D_
_x000D_
_x000D_
Number of patients deemed appropriate based on self-identified symptoms and interest _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
11 _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
27 _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
53 _x000D_
_x000D_
_x000D_
|
| _x000D_
_x000D_
_x000D_
Number of patients who started the program _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
10 _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
6 _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
n/a _x000D_
_x000D_
_x000D_
|
| _x000D_
_x000D_
_x000D_
Number of patients who completed the program _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
5 _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
6 _x000D_
_x000D_
_x000D_
| _x000D_
_x000D_
_x000D_
n/a _x000D_
_x000D_
_x000D_
|
_x000D_
Conclusions: In our institute, only 11 out of 101 interested patients finished the program. Some of the reasons and barriers identified in the implementation at our institution include:
_x000D_
- Trained workforce requirements_x000D_
- No clear funding or reimbursement available for the clinical and support staff to run this program _x000D_
- Patient selection process – We tried to select patients using self-administered questionnaire to avoid impact on clinical time and workflow but raises the question if provider referral/patient self-selection would improve attrition rates especially for Uplift Program_x000D_
- Motivation of patients to commit to an 8-week program _x000D_
- Finding a suitable time within the facilitators' work hours _x000D_
- Cognitive abilities due to epilepsy, polypharmacy, and other underlying factors, impacting the patient’s ability to learn and apply the program techniques _x000D_
- Availability of technology and reliable remote connectivity
_x000D_
HOBSCOTCH was more successful for patient compliance but is more labor intensive as it is 1:1. Project Uplift was more difficult to successfully implement due to: _x000D_
_x000D_
- Scheduling time that accommodates the 6-8 participants_x000D_
- Cognition of patients impacts the cohesiveness of the group_x000D_
_x000D_
Based on lessons learnt, we are implementing changes to improve the recruitment process and attrition rate at our institution. These include: _x000D_
_x000D_
- Funding source within and outside institution for support staff to run these programs_x000D_
- Further education and reminders to neurologists for appropriate referral for the program_x000D_
- Emphasis on mindfulness on education materials for Project Uplift instead of mood issues_x000D_
- Increase education and awareness of patients with emails and portal messages regarding these programs, allowing them to self-refer_x000D_
- Patient surveys to determine why patients express interest, but then do not enroll_x000D_
_x000D_
In conclusion, despite evidence suggesting that these programs improve quality of life of patients with epilepsy, various challenges exist for implementation of these programs at community level._x000D_
Funding: None