Timing the clinical onset of epileptic spasms in infantile epileptic spasms syndrome: A tertiary health center's experience.
diagnostic delay
epileptic spasms
infantile epileptic spasms syndrome
infantile spasms
lead time
Journal
Epilepsia
ISSN: 1528-1167
Titre abrégé: Epilepsia
Pays: United States
ID NLM: 2983306R
Informations de publication
Date de publication:
05 Feb 2024
05 Feb 2024
Historique:
revised:
12
01
2024
received:
15
08
2023
accepted:
16
01
2024
medline:
6
2
2024
pubmed:
6
2
2024
entrez:
6
2
2024
Statut:
aheadofprint
Résumé
Lead time to treatment (clinical onset of epileptic spasms [ES] to initiation of appropriate treatment) is known to predict outcomes in infantile epileptic spasms syndrome (IESS). Timing the clinical onset of ES is crucial to establish lead time. We investigated how often ES onset could be established to the nearest week. We aimed to (1) ascertain the exact date or estimate the nearest week of ES onset and (2) compare clinical/demographic factors between patients where date of ES onset was determined or estimated to the nearest week and patients whose date of ES onset could not be estimated to the nearest week. Reasons for difficulties in estimating date of ES onset were explored. Retrospective chart review of new onset IESS patients (January 2019-May 2022) extracted the date or week of the clinical onset of ES. Predictors of difficulty in date of ES onset estimation to the nearest week were examined by regression analysis. Sources contributing to difficulties determining date of ES onset were assessed after grouping into categories (provider-, caregiver-, disease-related). Among 100 patients, date of ES onset was estimated to the nearest week in 47%. On univariable analysis, age at diagnosis (p = .021), development delay (p = .007), developmental regression/stagnation (p = .021), ES intermixed with other seizures (p = .011), and nonclustered ES at onset (p = .005) were associated with difficulties estimating date of ES onset. On multivariable analysis, failure to establish date of ES onset was related to ES intermixed with other seizures (p = .004) and nonclustered ES at onset (p = .003). Sources contributing to difficulties determining date of ES onset included disease-related factors (ES characteristics, challenges interpreting electroencephalograms) and provider/caregiver-related factors (delayed diagnosis). Difficulties with estimation of lead time (due to difficulties timing ES onset) can impact clinical care (prognostication), as even small increments in lead time duration can have adverse developmental consequences.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Informations de copyright
© 2024 International League Against Epilepsy.
Références
Kelley SA, Knupp KG. Infantile spasms-have we made progress? Curr Neurol Neurosci Rep. 2018;18(5):27.
Zuberi SM, Wirrell E, Yozawitz E, Wilmshurst JM, Specchio N, Riney K, et al. ILAE classification and definition of epilepsy syndromes with onset in neonates and infants: position statement by the ILAE task force on nosology and definitions. Epilepsia. 2022;63(6):1349-1397.
Symonds JD, Elliott KS, Shetty J, Armstrong M, Brunklaus A, Cutcutache I, et al. Early childhood epilepsies: epidemiology, classification, aetiology, and socio-economic determinants. Brain. 2021;144(9):2879-2891.
Napuri S, Le Gall E, Dulac O, Chaperon J, Riou F. Factors associated with treatment lag in infantile spasms. Dev Med Child Neurol. 2010;52(12):1164-1166.
Donat JF, Wright FS. Unusual variants of infantile spasms. J Child Neurol. 1991;6(4):313-318.
Lux AL, Osborne JP. A proposal for case definitions and outcome measures in studies of infantile spasms and west syndrome: consensus statement of the West Delphi group. Epilepsia. 2004;45(11):1416-1428.
Riikonen R. A European perspective-comments on "infantile spasms: a U.S. consensus report". Epilepsia. 2010;51(10):2215-2216. author reply 21.
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.
Stafstrom CE, Arnason BG, Baram TZ, Catania A, Cortez MA, Glauser TA, et al. Treatment of infantile spasms: emerging insights from clinical and basic science perspectives. J Child Neurol. 2011;26(11):1411-1421.
Auvin S, Hartman AL, Desnous B, Moreau AC, Alberti C, Delanoe C, et al. Diagnosis delay in west syndrome: misdiagnosis and consequences. Eur J Pediatr. 2012;171(11):1695-1701.
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.
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.
D'Alonzo R, Rigante D, Mencaroni E, Esposito S. West syndrome: a review and guide for paediatricians. Clin Drug Investig. 2018;38(2):113-124.
O'Callaghan FJK, Edwards SW, Alber FD, Cortina Borja M, Hancock E, Johnson AL, et al. Vigabatrin with hormonal treatment versus hormonal treatment alone (ICISS) for infantile spasms: 18-month outcomes of an open-label, randomised controlled trial. Lancet Child Adolesc Health. 2018;2(10):715-725.
Yuskaitis CJ, Ruzhnikov MRZ, Howell KB, Allen IE, Kapur K, Dlugos DJ, et al. Infantile spasms of unknown cause: predictors of outcome and genotype-phenotype correlation. Pediatr Neurol. 2018;87:48-56.
Snead OC 3rd, Benton JW Jr, Hosey LC, Swann JW, Spink D, Martin D, et al. Treatment of infantile spasms with high-dose ACTH: efficacy and plasma levels of ACTH and cortisol. Neurology. 1989;39(8):1027-1031.
Eisermann MM, DeLaRaillere A, Dellatolas G, Tozzi E, Nabbout R, Dulac O, et al. Infantile spasms in down syndrome-effects of delayed anticonvulsive treatment. Epilepsy Res. 2003;55(1-2):21-27.
Kivity S, Lerman P, Ariel R, Danziger Y, Mimouni M, Shinnar S. Long-term cognitive outcomes of a cohort of children with cryptogenic infantile spasms treated with high-dose adrenocorticotropic hormone. Epilepsia. 2004;45(3):255-262.
Auvin S, Lamblin MD, Pandit F, Vallee L, Bouvet-Mourcia A. Infantile epileptic encephalopathy with late-onset spasms: report of 19 patients. Epilepsia. 2010;51(7):1290-1296.
Mytinger JR, Albert DVF, Twanow JD, Vidaurre J, Tan Y, Brock GN, et al. Compliance with standard therapies and remission rates after implementation of an infantile spasms management guideline. Pediatr Neurol. 2020;104:23-29.
Kellaway P, Hrachovy RA, Frost JD Jr, Zion T. Precise characterization and quantification of infantile spasms. Ann Neurol. 1979;6(3):214-218.
Lombroso CT. A prospective study of infantile spasms: clinical and therapeutic correlations. Epilepsia. 1983;24(2):135-158.
SAS Institute. The SAS system for windows. 9.3 ed. Cary, NC: SAS Institute; 2011.
Flanagin A, Frey T, Christiansen SL, Committee AMoS. Updated guidance on the reporting of race and ethnicity in medical and science journals. JAMA. 2021;326(7):621-627.
Shah B, Krishnan N, Kodish SR, Yenokyan G, Fatema K, Burhan Uddin K, et al. Applying the three delays model to understand emergency care seeking and delivery in rural Bangladesh: a qualitative study. BMJ Open. 2020;10(12):e042690.
Appleton RE. Infantile spasms. Arch Dis Child. 1993;69(5):614-618.
Watanabe K, Negoro T, Okumura A. Symptomatology of infantile spasms. Brain Dev. 2001;23(7):453-466.
Floyd RG, Shands EI, Alfonso VC, Phillips JF, Autry BK, Mosteller JA, et al. A systematic review and psychometric evaluation of adaptive behavior scales and recommendations for practice. J Appl Sch Psychol. 2015;31(1):83-113.
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.