Patient and provider attitudes regarding sudden unexpected death in epilepsy disclosure at a low-resource, minority community health center.

Autor: Schwartz K; The University of Arizona College of Medicine - Phoenix, 475 N. 5(th) Street, Phoenix, AZ 85004, United States; Mel and Enid Zuckerman College of Public Health, 550 E. Van Buren Street, Phoenix, AZ 85006, United States. Electronic address: kendallschwartz@arizona.edu., Moussavi A; The University of Arizona College of Medicine - Phoenix, 475 N. 5(th) Street, Phoenix, AZ 85004, United States. Electronic address: amoussav@asu.edu., Bujan Figueredo R; Arizona State University, 1151 S. Forest Ave, Tempe, AZ 85281, United States. Electronic address: rbujanfi@asu.edu., Ghering J; Prisma Health Department of Psychiatry, 15 Richland Medical Park Dr., Suite 141, Columbia, SC 29203, United States. Electronic address: jeghering@gmail.com., Redford W; Wesley Community Health Clinic, 1300 S. 10(th) St, Phoenix, AZ 85034, United States. Electronic address: wredford@wesleychc.org., Saririan S; Wesley Community Health Clinic, 1300 S. 10(th) St, Phoenix, AZ 85034, United States. Electronic address: ssaririan@arizona.edu., Irwin C; The University of Arizona College of Medicine - Phoenix, 475 N. 5(th) Street, Phoenix, AZ 85004, United States. Electronic address: cmi7@arizona.edu., Buchhalter J; Buchhalter Consulting, Phoenix, AZ, United States. Electronic address: buchhalterj@gmail.com.
Jazyk: angličtina
Zdroj: Epilepsy & behavior : E&B [Epilepsy Behav] 2024 Oct; Vol. 159, pp. 109969. Date of Electronic Publication: 2024 Aug 08.
DOI: 10.1016/j.yebeh.2024.109969
Abstrakt: Background: Sudden Unexpected Death in Epilepsy (SUDEP) is a complication of epilepsy responsible for approximately 1 death per 1000 patients. The literature has demonstrated minimal SUDEP disclosure between providers and patients, although patients have consistently reported desire to know about their risk. However, the majority of these studies has been conducted in Caucasian populations which did not seek to include lower socio-economic class individuals. Thus, the purpose of this study is to determine patient and provider attitudes regarding SUDEP disclosure at a community health center serving minority, predominantly Hispanic, patients.
Methods: This cross-sectional study utilized surveys distributed to patients with epilepsy (n = 20), patients with diabetes (n = 20), those with no chronic disease (n = 20) and providers (n = 13). Online surveys were distributed to 13 providers whereas phone surveys were conducted for patients with epilepsy. In-person surveys were distributed to patients with diabetes and no chronic disease to serve as comparison groups. Surveys were available in both Spanish and English. Patient surveys consisted of demographic information and questions evaluating their current knowledge and preferences regarding disclosure of a potentially fatal disorder.
Results: Twenty patients with epilepsy, 20 patients with diabetes, 20 patients without chronic diseases, and 9 providers responded to the online or in-person surveys. Of the patients with epilepsy, 90 % (n = 18/20) were Hispanic which was not significantly different from the comparison groups. 45 % (n = 9/20) believed they had a higher rate of death due to epilepsy with only 3 patients having heard of SUDEP prior to the survey, and only 1 learning this from a physician. All patients wanted to know everything there was to know regarding their condition, including a higher risk of unexpected death. Most patients (85%, n = 17/20) believe everyone with epilepsy should be informed of SUDEP and this information should come from their provider (90 %, n = 18/20). Results were similar for both comparison groups, except patients with diabetes unanimously desired to know about a theoretical risk of death at the time of diagnosis. Of the providers, 66.7% (n = 6/9) never discuss SUDEP, with the remaining 33.3% (n = 3/9) discussing SUDEP rarely. The primary reason for not discussing SUDEP was not knowing enough about it (66.7%, n = 5/9).
Conclusion: Almost all patients with epilepsy had no knowledge of SUDEP, yet desired to know this information within the first two visits. Providers in the primary care setting rarely discuss SUDEP, most often due to lack of knowledge. These results are very similar to those found in mainly white, higher socioeconomic populations and indicate that race should not be a barrier to SUDEP disclosure.
Competing Interests: Declaration of competing interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: [Dr. Buchhalter serves as a paid consultant to the Epilepsy Foundation, Epilepsy Study Consortium, Biocodex Inc, Epilog Clouds of Care and UCB Inc. He receives research support from the Dravet Syndrome Foundation and serves as a co-chair for Partners Against Mortality in Epilepsy on a volunteer basis. No other authors have any declarations of competing interests.].
(Copyright © 2024 Elsevier Inc. All rights reserved.)
Databáze: MEDLINE
Externí odkaz: