Validating an Algorithm to Identify Patients With Infantile Spasms Using Medical Claims

Yarosz, Shannon; Aghamoosa, Hosain; Grinspan, Zachary M.; Patel, Anup D.

doi:10.1177/0883073818774960

Cited by 10 publications

(11 citation statements)

References 16 publications

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“…As reported by Hussain et al [100] in a study carried out in 100 patients with ISs the treatment was started only after more than a week from the onset of the first clinical manifestations with a median time of delay of treatment of 24.5 days. Wang et al [101] developed an algorithm using medical claims data at the aim to properly and early identify the ES.…”

Section: Clinical Features Seizure Types and Eeg Featuresmentioning

confidence: 99%

West syndrome: a comprehensive review

et al. 2020

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Since its first clinical description (on his son) by William James West (1793-1848) in 1841, and the definition of the classical triad of (1) infantile spasms; (2) hypsarrhythmia, and (3) developmental arrest or regression as "West syndrome", new and relevant advances have been recorded in this uncommon disorder. New approaches include terminology of clinical spasms (e.g., infantile (IS) vs. epileptic spasms (ES)), variety of clinical and electroencephalographic (EEG) features (e.g., typical ictal phenomena without EEG abnormalities), burden of developmental delay, spectrum of associated genetic abnormalities, pathogenesis, treatment options, and related outcome and prognosis. Aside the classical manifestations, IS or ES may present with atypical electroclinical phenotypes (e.g., subtle spasms; modified hypsarrhythmia) and may have their onset outside infancy. An increasing number of genes, proteins, and signaling pathways play crucial roles in the pathogenesis. This condition is currently regarded as a spectrum of disorders: the so-called infantile spasm syndrome (ISs), in association with other causal factors, including structural, infectious, metabolic, syndromic, and immunologic events, all acting on a genetic predisposing background. Hormonal therapy and ketogenic diet are widely used also in combination with (classical and recent) pharmacological drugs. Biologically targeted and gene therapies are increasingly studied. The present narrative review searched in seven electronic databases (primary MeSH terms/keywords included West syndrome, infantile spasms and infantile spasms syndrome and were coupled to 25 secondary clinical, EEG, therapeutic, outcomes, and associated conditions terms) including MEDLINE, Embase, Cochrane Central, Web of Sciences, Pubmed, Scopus, and OMIM to highlight the past knowledge and more recent advances.

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Section: Clinical Features Seizure Types and Eeg Featuresmentioning

confidence: 99%

West syndrome: a comprehensive review

et al. 2020

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“…The use of ICD code alone performed the best. 3 Similarly, Reid et al showed ICD-9 and ICD-10 codes were both sensitive (89%) and specific (92%) for adult patients with epilepsy. One study used diagnosis codes from a Medicaid multi-state database to identify patients with Lennox-Gastaut syndrome (LGS) but the database did not contain complete clinical information, limiting the authors' ability to validate the data.…”

Section: Prior Literaturementioning

confidence: 94%

Validating Coding for the Identification of Pediatric Treatment Resistant Epilepsy Patients

Freedman

Grinspan

Glynn

et al. 2021

Child Neurology Open

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The International Classification of Diseases (ICD) system includes sub codes to indicate that an individual with epilepsy is treatment resistant. These codes would be a valuable tool to identify individuals for quality improvement and population health, as well as for recruitment into clinical trials. However, the accuracy of these codes is unclear. We performed a single center cross sectional study to understand the accuracy of ICD codes for treatment resistant epilepsy. We identified 344 individuals, roughly half with treatment resistant epilepsy The ICD code had a sensitivity of 90% (147 of 164) and specificity of 86% (155 of 180). The miscoding of children with refractory epilepsy was attributed to the following reasons: 5 patients had epilepsy surgery, 4 had absence epilepsy, 4 patients were seen by different providers, and 1 patient was most recently seen in movement disorders clinic. ICD codes accurately identify children with treatment resistant epilepsy.

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“…From PHIS, we identified all patients with an International Classification of Diseases, Ninth Revision, Clinical Modifications (ICD-9) code indicative of infantile spasms (ICD-9-CM: 345.6, 345.60, 345.61), from January 1, 2004 to September 30, 2015. Prior work has indicated the effectiveness of using ICD codes for identifying patients with IS ( 8 ). Outcomes for each patient were measured for up to five years after initial IS diagnosis.…”

Section: Methodsmentioning

confidence: 99%

Long-Term Health Outcomes of Infantile Spasms Following Prednisolone vs. Adrenocorticotropic Hormone Treatment Characterized Using Phenome-Wide Association Study

et al. 2022

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ObjectiveTo determine differences in long-term health and neurological outcomes following infantile spasms (IS) in patients treated with adrenocorticotropic hormone (ACTH) vs. prednisolone/prednisone (PRED).MethodsA retrospective, case-control study of patients with an International Classification of Diseases, Ninth Revision, Clinical Modifications (ICD-9) diagnosis of IS, identified over a 10-year period from a national administrative database, was conducted. IS patients treated with ACTH or PRED were determined and cohorts established by propensity score matching. Outcomes, defined by hospital discharge ICD codes, were followed for each patient for 5 years. Related ICD codes were analyzed jointly as phenotype codes (phecodes). Analysis of phecodes between cohorts was performed including phenome-wide association analysis.ResultsA total of 5,955 IS patients were identified, and analyses were subsequently performed for 493 propensity score matched patients, each in the ACTH and PRED cohorts. Following Bonferroni correction, no phecode was more common in either cohort (p < 0.001). However, assuming an a priori difference, one phecode, abnormal findings on study of brain or nervous system (a category of abnormal neurodiagnostic tests), was more common in the PRED cohort (p <0.05), and was robust to sensitivity analysis. Variability in outcomes was noted between hospitals.SignificanceWe found that long-term outcomes for IS patients following ACTH or PRED treatment were very similar, including for both neurological and non-neurological outcomes. In the PRED-treated cohort there was a higher incidence of abnormal neurodiagnostic tests, assuming an a priori statistical model. Future studies can evaluate whether variability in outcomes between hospitals may be affected by post-treatment differences in care models.

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Validating an Algorithm to Identify Patients With Infantile Spasms Using Medical Claims

Cited by 10 publications

References 16 publications

West syndrome: a comprehensive review

West syndrome: a comprehensive review

Validating Coding for the Identification of Pediatric Treatment Resistant Epilepsy Patients

Long-Term Health Outcomes of Infantile Spasms Following Prednisolone vs. Adrenocorticotropic Hormone Treatment Characterized Using Phenome-Wide Association Study

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