Clinical Implementation of a Parent Questionnaire to Identify Seizures in High-Risk Children

Abstract

Background: This study evaluated the effectiveness of a parent-completed questionnaire for detecting seizures in high-risk children. Methods: A 2-part seizure screen for children up to 12 years of age with suspected autism spectrum disorder, developmental delay, or seizure, was implemented in 12 Massachusetts clinics serving populations with high health disparities. Primary care providers and developmental behavioral pediatricians administered part 1, a brief highly sensitive screen. If the result was positive, a research assistant administered part 2, a more detailed screen with higher specificity. Positive part 2 results prompted a specialized assessment by a pediatric neurologist. Screening data were evaluated for detection of seizures or other diagnoses, reason for conducting the screen, and appointment outcomes. Data analysis included chi-squared tests, percentages for categorical variables, and means for numerical data. Results: Of 207 administered seizure questionnaires, 78% of children screened positive on part 1. Of those, 94% of families completed part 2 by telephone, and 64 individuals screened positive. The screen helped to detect 15 new seizure diagnoses and 35 other neurologic diagnoses. Average time to first scheduled appointment was 23.8 days. The no-show rate was 7%. Conclusions: The seizure questionnaire effectively identified seizures and other disorders in a diverse population of high-risk children. Broader use of this low-cost screening tool could improve access to care for children with suspected seizures, increase seizure recognition, and help allocate resources more effectively.

A Novel Parent Questionnaire for the Detection of Seizures in Children of Spanish-Speaking Families

“…The English version of this survey has been used for research and to screen high-risk populations in clinical settings. 11,23,24 With such a high negative predictive value of 97.2% in the Spanish version, this tool could be used by physicians or other trained medical staff to screen, by phone or in person, patients with a seizurelike event needing additional care or testing. If a patient screens negative on the survey, it is unlikely that he or she has seizures.…”

“…10 Subsequently, the English version of this questionnaire has been implemented by several pediatric practices in Massachusetts to screen at-risk children such as those with developmental delay and autism. 11 Our aim in this report is to detail the development of a Spanish version of the seizure screening tool for children of Spanish-speaking families and to describe its reliability and validity.…”

Socioeconomic disparities in epilepsy care

“…For example, in Boston, a diverse team of providers, researchers, patients, and families came together to create a novel telehealth tool to facilitate in-home telemedicine appointments and save costs in the context of an urban population highly affected by healthcare disparities [22]. Another group developed a seizure screening questionnaire for primary care physicians caring for high risk children (under 12 years old with suspected autism spectrum disorder, developmental delay, or seizure) and then developed a system to rapidly see these children in seizure clinic [23]. Ideally, tools like these, which incorporate some of the concepts of patient navigation (i.e.…”