Delays to care in infantile epileptic spasms syndrome: Racial and ethnic inequities.
disparities
inequities
infantile epileptic spasms syndrome
Journal
Epilepsia
ISSN: 1528-1167
Titre abrégé: Epilepsia
Pays: United States
ID NLM: 2983306R
Informations de publication
Date de publication:
12 Nov 2023
12 Nov 2023
Historique:
revised:
06
11
2023
received:
30
05
2023
accepted:
09
11
2023
pubmed:
13
11
2023
medline:
13
11
2023
entrez:
12
11
2023
Statut:
aheadofprint
Résumé
Non-Hispanic (NH) Black children are less likely to receive a standard treatment course for infantile epileptic spasms syndrome (IESS) than White/NH children at pediatric tertiary care epilepsy centers in the United States. However, if inequities exist in time to diagnosis is unknown. Diagnostic delays as little as 1 week can be associated with worse developmental outcomes. Diagnostic delays were evaluated in a retrospective cohort of 100 children with new onset IESS between January 2019 and May 2022. Children with Black, Indigenous, and People of Color (BIPOC) caregivers were more likely to experience clinically significant delays in referral from first provider to neurologist, when compared to White/NH children, even after controlling for other demographic and clinical variables (odds ratio = 4.98, confidence interval = 1.24-19.94, p = .023). Disproportionate diagnostic delays place BIPOC children at risk of adverse developmental and epilepsy outcomes. Further interventional prospective and qualitative studies are needed to address inequities in care.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Subventions
Organisme : Boston Children's Hospital
Informations de copyright
© 2023 International League Against Epilepsy.
Références
Harini C, Nagarajan E, Bergin AM, Pearl P, Loddenkemper T, Takeoka M, et al. Mortality in infantile spasms: a hospital-based study. Epilepsia. 2020;61(4):702-713.
O'Callaghan FJ, Lux AL, Darke K, Edwards SW, Hancock E, Johnson AL, et al. The effect of lead time to treatment and of age of onset on developmental outcome at 4 years in infantile spasms: evidence from the United Kingdom infantile spasms study. Epilepsia. 2011;52(7):1359-1364.
Knupp KG, Coryell J, Nickels KC, Ryan N, Leister E, Loddenkemper T, et al. Response to treatment in a prospective national infantile spasms cohort. Ann Neurol. 2016;79(3):475-484.
O'Callaghan FJ, Edwards SW, Alber FD, Hancock E, Johnson AL, Kennedy CR, et al. Safety and effectiveness of hormonal treatment versus hormonal treatment with vigabatrin for infantile spasms (ICISS): a randomised, multicentre, open-label trial. Lancet Neurol. 2017;16(1):33-42.
National Institute for health and care excellence (NICE). Epilepsies in children, young people and adults: NICE Guideline. [NG217] 2022.
Hussain SA, Lay J, Cheng E, Weng J, Sankar R, Baca CB. Recognition of infantile spasms is often delayed: the ASSIST study. J Pediatr. 2017;190:215-221.e1.
Napuri S, Gall LEE, Dulac O, Chaperon J, Riou F. Factors associated with treatment lag in infantile spasms. Dev Med Child Neurol. 2010;52(12):1164-1166.
Baumer FM, Mytinger JR, Neville K, Briscoe Abath C, Gutierrez CA, Numis AL, et al. Inequities in therapy for infantile spasms: a call to action. Ann Neurol. 2022;92(1):32-44.
Chourasia N, Yuskaitis CJ, Libenson MH, Bergin AM, Liu S, Zhang B, et al. Infantile spasms: assessing the diagnostic yield of an institutional guideline and the impact of etiology on long-term treatment response. Epilepsia. 2022;63(5):1164-1176.
Waiswa P, Kallander K, Peterson S, Tomson G, Pariyo GW. Using the three delays model to understand why newborn babies die in eastern Uganda. Trop Med Int Health. 2010;15(8):964-972.
Heinze G, Wallisch C, Dunkler D. Variable selection - a review and recommendations for the practicing statistician. Biom J. 2018;60(3):431-449.
Grinspan ZM, Patel AD, Hafeez B, Abramson EL, Kern LM. Predicting frequent emergency department use among children with epilepsy: a retrospective cohort study using electronic health data from 2 centers. Epilepsia. 2018;59(1):155-169.
McClelland S 3rd, Curran CC, Davey CS, Okuyemi KS. Intractable pediatric temporal lobe epilepsy in the United States: examination of race, age, sex, and insurance status as factors predicting receipt of resective treatment. J Neurosurg. 2007;107(6 Suppl):469-473.
Greenwood BN, Hardeman RR, Huang L, Sojourner A. Physician-patient racial concordance and disparities in birthing mortality for newborns. Proc Natl Acad Sci U S A. 2020;117(35):21194-21200.
Betjemann JP, Thompson AC, Santos-Sánchez C, Garcia PA, Ivey SL. Distinguishing language and race disparities in epilepsy surgery. Epilepsy Behav. 2013;28(3):444-449.
Hamade YJ, Palzer EF, Helgeson ES, Hanson JT, Walczak TS, McGovern RA. Persistent racial and ethnic disparities as a potential source of epilepsy surgery underutilization: analysis of large national datasets from 2006-2016. Epilepsy Res. 2021;176:106725.
Okubo Y, Fallah A, Hayakawa I, Handa A, Nariai H. Trends in hospitalization and readmission for pediatric epilepsy and underutilization of epilepsy surgery in the United States. Seizure. 2020;80:263-269.
Sanchez Fernandez I, Stephen C, Loddenkemper T. Disparities in epilepsy surgery in The United States of America. J Neurol. 2017;264(8):1735-1745.
Thompson AC, Ivey SL, Lahiff M, Betjemann JP. Delays in time to surgery for minorities with temporal lobe epilepsy. Epilepsia. 2014;55(9):1339-1346.
Berg AT, Loddenkemper T, Baca CB. Diagnostic delays in children with early onset epilepsy: impact, reasons, and opportunities to improve care. Epilepsia. 2014;55(1):123-132.
Wagner J, Bhatia S, Marquis BO, Vetter I, Beatty CW, Garcia R, et al. Health disparities in pediatric epilepsy: methods and lessons learned. J Clin Psychol Med Settings. 2022;30:1-10.
Bailey ZD, Feldman JM, Bassett MT. How structural racism works - racist policies as a root cause of U.S. racial health inequities. N Engl J Med. 2021;384(8):768-773.
Broder-Fingert S, Mateo CM, Zuckerman KE. Structural racism and autism. Pediatrics. 2020;146(3):e2020015420.
Gregerson CHY, Bakian AV, Wilkes J, Knighton AJ, Nkoy F, Sweney M, et al. Disparities in pediatric epilepsy remission are associated with race and ethnicity. J Child Neurol. 2019;34(14):928-936.
Johnson TJ. Intersection of bias, structural racism, and social determinants with health care inequities. Pediatrics. 2020;146(2):e2020003657.
Kharbanda AB. Racial inequities in pediatric emergency care. JAMA Netw Open. 2021;4(1):e2034019.