Teleneurology based management of infantile spasms during COVID-19 pandemic: A consensus report by the South Asia Allied West syndrome research group

Madaan, Priyanka; Sahu, Jitendra Kumar; Wanigasinghe, Jithangi; Fatema, Kanij; Linn, Kyaw; Mynak, Mimi Lhamu; Gómez, Nicolás Garófalo; Samia, Pauline; Poudel, Prakash; Chand, Prem; Riikonen, Raili

doi:10.1016/j.ebr.2020.100423

Cited by 14 publications

(12 citation statements)

References 14 publications

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“…Teleneurology can be a solution to some of these difficulties and might help maintain a robust follow-up. The COVID-19 pandemic should be taken as an opportunity for infrastructure building for telehealth services, which can later be used for rigorous follow-up [26,27]. Besides, the current study performed an objective assessment of neurodevelopmental outcomes using a validated scale in a large cohort of children with WS.…”

Section: Discussionmentioning

confidence: 99%

Epilepsy and Neurodevelopmental Outcomes in a Cohort of West Syndrome Beyond Two Years of Age

et al. 2021

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Objective To determine epilepsy and neurodevelopmental outcomes beyond 2 y of age and their putative prognostic factors in children with West syndrome (WS). Methods This cross-sectional study was initiated after approval from Institutional Ethics Committee. A follow-up cohort of 114 children (aged ≥ 2 y) diagnosed and treated for WS at the authors' center were assessed in-person for epilepsy and neurodevelopmental outcomes using Vineland Social Maturity Scale -Malin's adaptation for Indian children. Subsequently, age at onset, lead-time-to-treatment, etiology, and response to any of the standard therapies were analyzed as possible predictors of these outcomes. Results Of 114 children (mean age: 55 ± 32 mo, 91 boys), structural etiology was the predominant underlying etiology (79.8%) for WS. At 2 y of age, 64% had ongoing seizures. At the last follow-up, 76% had social quotient < 55, and 39% had cerebral palsy (spastic quadriparesis in 21%). An underlying structural etiology was associated with ongoing seizures [OR (95% CI) 3.5 (1.4-9); p = 0.008] at 2 y of age and poor developmental outcomes [OR (95% CI): 3.3 (1.3-8.9); p = 0.016]. Complete cessation of spasms with the standard therapy was significantly associated with better seizure control [OR (95% CI): 5.4 (2.3-13); p < 0.001] and neurodevelopmental outcome [OR (95% CI): 5.2 (1.8-14.9); p < 0.001]. ConclusionThe majority of children with WS have a poor neurodevelopmental outcome and epilepsy control on follow-up. The underlying etiology and response to initial standard therapy for epileptic spasms have a prognostic role in predicting the neurological outcome in these patients on follow-up.

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Section: Discussionmentioning

confidence: 99%

Epilepsy and Neurodevelopmental Outcomes in a Cohort of West Syndrome Beyond Two Years of Age

et al. 2021

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“…The sole purpose of the group is to improve the care of children with ISS through collaborative research. [9][10][11] It was conducted from January to May 2021 and was granted ethical approval from the Ethics Review Committee of the Faculty of Medicine, University of Colombo (EC/21/45). Regional demographics and healthcare indexes related to childcare (a), availability of pediatric neurology services and facilities to classify etiology of ISS (b) were tabulated for each country by the study group members.…”

Section: Methodsmentioning

confidence: 99%

“…The sole purpose of the group is to improve the care of children with ISS through collaborative research. 9 , 10 , 11 …”

Section: Methodsmentioning

confidence: 99%

Classifying etiology of infantile spasms syndrome in resource‐limited settings: A study from the South Asian region

et al. 2021

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“…It has been also advised to held tele-consultations to assess compliance with therapy and the effectivenes of treatment in days 7,14,30,42,60,90 after treatment introduction and every 3 months afterwards. [28] Ketogenic diet has been considered as one of possible interventions in drug-resistant epilepsy, which in non-pandemic setting was normally initiated during hospital admission. Two research papers have been discussing introduction of ketogenic diet in home-setting, as well as follow-up on patients with means of telehealth.…”

Section: Disease-specific Telemedicine Research and Considerationsmentioning

confidence: 99%

Pediatric neurology and telehealth before and during SARS-CoV-2 pandemic

Gołębiowska

2021

J Educ Health Sport

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Telehealth has been known in medicine for over 70 years. Until the year 2020 it has been utilized in a limited setting to provide long-distance care for individuals residing in areas lacking health facilities. SARS-CoV-2 pandemic shifted the priorities of healthcare system towards COVID-19 infections, which resulted in the transition of non-emergency consultations to telemedicine in many countries. Since pediatric neurology requires frequent follow-up and multidisciplinary care, the purpose of our work is to determine the spectrum of use of telehealth in pediatric neurology before and during the pandemic. Secondly, we would like to discuss the differences of focus in tele-neurology for children patients between the pre-pandemic and during pandemic timeframes.Within 171 articles of PubMED database, 36 substantial articles on the introduction of telehealth to pediatric neurology were included in the review. 30.5% of the articles have included the implementation of telemedicine before the pandemic, 69.5% of the articles discussed improvements made after the pandemic started. The spectrum of disorders and interventions considered for telehealth included epilepsy, cerebral palsy, rare diseases, teleneuropsychology and teleneurorehabilitation. Among major differences between pre-pandemic and pandemic research, increase in international cooperation and discussion of not only medical, but also scientific and academic impact of the pandemic could be noted.Telehealth offers sustainable alternatives to many interventions which cannot be performed in-person during public health emergency such as SARS-CoV-2 pandemic. Despite high satisfaction of caregivers and healthcare professionals from the virtual visits, solutions are still far from perfection and need improvements to provide more support for the patients with various disorders, cover the concerns of privacy and confidentiality, as well as support patients from low-income and lack of electronic techology backgrounds.

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Teleneurology based management of infantile spasms during COVID-19 pandemic: A consensus report by the South Asia Allied West syndrome research group

Cited by 14 publications

References 14 publications

Epilepsy and Neurodevelopmental Outcomes in a Cohort of West Syndrome Beyond Two Years of Age

Epilepsy and Neurodevelopmental Outcomes in a Cohort of West Syndrome Beyond Two Years of Age

Classifying etiology of infantile spasms syndrome in resource‐limited settings: A study from the South Asian region

Pediatric neurology and telehealth before and during SARS-CoV-2 pandemic

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