Analysing patient-generated data to understand behaviours and characteristics of women with epilepsy of childbearing years: A prospective cohort study.
Seizure
; 108: 24-32, 2023 May.
Article
en En
| MEDLINE
| ID: mdl-37060628
ABSTRACT
BACKGROUND:
Women with epilepsy (WWE) are vulnerable in pregnancy, with increased risks to mother and baby including teratogenic risks, especially from valproate. The free EpSMon mobile-phone app allows self-monitoring to afford patient-centred feedback on seizure related risks, such as sudden death in epilepsy (SUDEP) to its users. We sought to generate insights into various seizure related risks and its treatments in WWE of childbearing age (16 to 60 years ) using EpSMon.METHODS:
The study utilizes a prospective real-world cohort of 5.5 years. Patient reported data on demographics, medication taken, diagnoses, seizure types and recognised biological, psychological, and social factors of seizure related harm were extracted. Data was stratified according to frequent and infrequent users and those scoring lower and higher risk scores. Multivariate logistic regression and different statistical tests were conducted.FINDINGS:
Data from 2158 WWE of childbearing age encompassing 4016 self-assessments were analysed. Overall risk awareness was 25.3% for pregnancy and 54.1% for SUDEP. Frequent users were more aware of pregnancy risks but not of SUDEP. Repeated EpSMon use increased SUDEP awareness but not pregnancy risks. Valproate was used by 11% of WWE, ranging from 6.5% of younger to 31.5% of older women.CONCLUSIONS:
The awareness to risks to pregnancy, SUDEP and valproate is low. Valproate is being used by a significant minority. It is imperative risk communication continues for WWE based on their individual situation and need. This is unlikely to be delivered by current clinical models. Digital solutions hold promise but require work done to raise implementation and acceptability.Palabras clave
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Epilepsia
/
Muerte Súbita e Inesperada en la Epilepsia
Tipo de estudio:
Etiology_studies
/
Observational_studies
/
Prognostic_studies
/
Risk_factors_studies
Aspecto:
Equity_inequality
Límite:
Adolescent
/
Adult
/
Aged
/
Female
/
Humans
/
Middle aged
Idioma:
En
Revista:
Seizure
Asunto de la revista:
NEUROLOGIA
Año:
2023
Tipo del documento:
Article
País de afiliación:
Reino Unido