Background: This review aimed to 1) identify and assess the quality of discrete choice experiments (DCEs) examining preferences related to epilepsy treatment; 2) summarize the attributes and attribute levels measured in these studies; 3) identify how researchers selected and developed these attributes; and 4) identify which attributes are most important for epilepsy patients.
Methods: A systematic literature review using PubMed, Web of Science and Scopus databases from database inception to February or April 2022. We included primary discrete-choice experiments eliciting preferences for various attributes of pharmacological and surgical interventions in patients diagnosed with epilepsy or the parents/carers of children with epilepsy. We excluded non- primary studies, studies assessing preferences for nonpharmacological treatment and studies that elicit preferences using methods other than discrete choice experiments. Two authors independently selected studies, extracted data and assessed risk of bias of studies. The quality of the included studies was assessed using two validated checklists. Study characteristics and findings were summarized descriptively.
Results: A total of seven studies were included in the review. The majority of studies explored patients' preferences, and two compared the preferences of patients with physicians. The majority (n = 6) compared two medications, and one compared two surgical options to continuing medication options. The studies examined 44 attributes in total, including side effects (n = 26), efficacy expressed as being seizure free or have fewer seizures (n = 8), costs (n = 3), dosing frequency (n = 3), duration of side effects (n = 2), mortality (n = 1), long-term problems after surgery (n = 1) and surgical options (n = 1). The findings indicate that people with epilepsy have strong preferences for improving seizure control, which was ranked as the top priority in all studies. Patients also have a strong preference for the reduction of adverse effects and may be willing to make trade-offs between improved seizure control and reduction of long-term side effects that may impact their quality of life.
Conclusions: The use of DCEs in measuring patients' preference for epilepsy treatment is accumulating. However, inadequate reporting of methodological details may reduce decision-makers' confidence in the findings. Suggestions for future research are provided.
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http://dx.doi.org/10.1186/s13561-023-00431-0 | DOI Listing |
Epilepsy Behav Rep
March 2025
Department of Paediatrics, Schulich School of Medicine & Dentistry, 1151 Richmond St, London, Ontario N6A 5C1, Canada.
Epilepsy is the most common chronic neurological condition in children. Many barriers exist in early recognition which cause delay in care and impact quality of life. Some of these children require advanced treatments which are underutilized due to lack of education, awareness and referrals.
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January 2025
SynGAP Research Fund, 2856 Curie Pl., San Diego, CA 92122, USA.
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View Article and Find Full Text PDFFront Neurol
December 2024
Brain and Development Research Axis, Azrieli CHU Ste-Justine Research Center, Montreal, QC, Canada.
Epileptic spasms (ES) are a unique seizure type typically presenting in the form of infantile epileptic spasms syndrome (IESS) with characteristic hypsarrhythmia on scalp EEG and a preponderance with developmental delay or regression. While pharmacotherapy is the mainstay of treatment, surgical options, including disconnective or resective procedures, are increasingly recognized as viable therapeutic options for recurrent or persistent ES. However, limited data on safety, effectiveness, and prognostic factors hinder informed decision-making regarding surgery indications, timing, and intervention type.
View Article and Find Full Text PDFBMJ Open
December 2024
INSERM UMR1231 Génétique des Anomalies du Développement (GAD), Université de Bourgogne, Dijon, France.
Introduction: The megalencephaly capillary malformation polymicrogyria (MCAP syndrome) results from mosaic gain-of-function variants. The main clinical features are macrocephaly, somatic overgrowth, neurodevelopmental delay and brain anomalies. Alpelisib (Vijoice) is a recently FDA-approved PI3Kα-specific inhibitor for patients with PIK3CA-related overgrowth spectrum (PROS).
View Article and Find Full Text PDFNeurology
February 2025
Health Services Research Program, Department of Neurology, University of Michigan, Ann Arbor; and.
Background And Objectives: Timely access to specialist care is crucial in expeditious diagnosis and treatment. Our study aimed to assess the time patients wait from being referred by a physician to seeing a neurologist using Medicare data. Specifically, we evaluated differences in access related to sex, race/ethnicity, geography, and availability of neurologists.
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