Adapting PACES in Epilepsy: Needs Assessment Survey of Spanish-speaking People with Epilepsy
Abstract number :
2.313
Submission category :
11. Behavior/Neuropsychology/Language / 11A. Adult
Year :
2022
Submission ID :
2204507
Source :
www.aesnet.org
Presentation date :
12/4/2022 12:00:00 PM
Published date :
Nov 22, 2022, 05:25 AM
Authors :
Jason A D Smith, PhD, ABPP – University of Texas Southwestern Medical Center; Erica Johnson, PhD – University of Washington; Jacqueline Abrisqueta-Gomez, PhD – University of Texas Southwestern Medical Center; Tessa Warheit-Niemi, BS – University of Washington; Jason Barber, MS – University of Washington; Robert Fraser, PhD – University of Washington
Rationale: Needs assessment of Spanish-speaking people with epilepsy (PWE) was done to culturally and linguistically adapt the content, format and delivery of the Program for Active Consumer Engagement in Self-management (PACES). PACES, an 8-week, professional and peer-lead, group-based program was created and validated with English-speaking . A randomized control trial (RCT) of PACES showed immediate and long-term effects on depression, epilepsy self-management and self-efficacy, and QoL. Despite known disparities, minimal self-management research focused on Hispanic PWE exists.
Methods: English PACES materials translated into Spanish and back translated, were verified by bilingual, bicultural epilepsy clinician-researchers. Next, the Spanish PACES manual was presented to separate focus groups of Spanish-speaking PWE and Spanish-speaking epileptologists from Latin America. Patient groups quantitative (Likert-scaled ratings) and qualitative (open-ended queries) data validated content. A needs assessment survey was translated and implemented to quantify Spanish-speaking PWE’s perceived epilepsy-related problems and their opinions as to treatment administration.
Results: Spanish-speaking PWE completed 100 mailed surveys at a 30% response rate. Respondents were mainly males (57%) from Mexico (90%), on average 45.4-years-old and living in the United States 25-years. Results were compared to previously surveyed English-speaking PWE. Demographic and medical characteristics are outlined (Table 1). Mann-Whitney tests comparing Spanish- and English-speaking PWE's responses controlling for multiple comparisons were not statistically significant. Unadjusted results indicated differences on isolated program content needs of independent living, social support, medication side effects, irritability, sleep, safety, and diet - which are each emphasized in the existing PACES program.
Spanish-speaking PWE prioritized web or phone format (similar to English-speaking PWE), yet 52% do not know how to use the internet (compared to 14%) despite high cell phone possession, 81%. Other delivery preferences were non-significant. There was a significantly stronger preference for a psychologist as the PACES interventionist, there was a lower preference for help with coping skill development (the relative priority being education only).
Conclusions: The original PACES content and structure was supported by Spanish-speaking PWE. Data indicate the relevance of telehealth (phone or web at the patient’s discretion) delivery by a Spanish-speaking psychologist and peer facilitator dyad. Importantly, these data do not suggest new needs (e.g., vocational), nor do they nullify existing content. Although not queried directly, we observed a patient preference to have a family member present; delivery in upcoming RCT will offer this aspect.
Funding: This presentation is a product of a Health Promotion and Disease Prevention Research Center supported by Cooperative Agreement Number U48DP006398 from the Centers for Disease Control and Prevention. The findings and conclusions in this presentation are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
Behavior