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Epilepsy in the United States: Understanding the Epilepsy Patient Experience

  • Report

  • 142 Pages
  • January 2024
  • Region: United States
  • Health Union
  • ID: 6008367
This 142-page report provides a comprehensive look at life for those living with epilepsy. Using detailed quantitative data, it gives a full picture of the epilepsy patient experience - from symptoms to treatment to HCP relationships to quality of life - so you can make informed, strategic decisions, identify opportunities, and understand potential challenges.

In the United States, about 3 million adults and half a million children have epilepsy. One in every 26 people will have epilepsy in their lifetime.

This report offers an in-depth look at the epilepsy patient experience. This large-scale, patient-reported data leverages vital quantitative insights essential to understanding key touchpoints in the epilepsy patient journey, including condition management, HCP engagement, quality of life, treatment experience and satisfaction, and much more.

What makes this report unique?

Very simply: the focus on patients. This syndicated report is one of the few studies that is based on primary research with diagnosed patients, bringing the patient voice to the forefront.

Valuable insights. Informed decisions.

This report lifts the curtain on life with epilepsy, giving stakeholders an actionable look at the behaviors, attitudes, perceptions, needs, and experiences of people living with the condition. Data can be used to inform strategic decisions, including product communications, competitive assessments, concept development, landscape analyses, patient journey overlays, and forecasting inputs.

This report also addresses important questions that stakeholders may not even know to ask while offering valuable insights into must-have patient-reported data points not available anywhere else. Add-on custom data analysis opportunities are also available for an additional cost - please see the report following purchase for more information.

The analyst is a proven leader in understanding the experiences of people living with chronic health conditions. They reach millions of people through their portfolio of 45+ condition-specific online health communities to provide information, connection, and support to patients and caregivers in the U.S.

This report includes a deep-dive into:

  • Epilepsy patient demographics
    • Age, gender, ethnicity, marital status, children, employment status, ocation, insurance, and other health conditions
  • Impact of epilepsy on quality of life
    • Time since diagnosis, types of seizures, impact on quality of life, symptoms experienced, and what patients wish others better understood
  • Information-seeking behaviors
    • Information sources used, plus topics of interest
  • HCP engagement
    • Primary HCP seen for condition, satisfaction with HCP, and discussion about brands aware of/not used
  • Epilepsy treatment awareness and experiences
    • Aided awareness of specific treatments, treatment experience, satisfaction with current treatments, perceived control with current treatment plan, and interest/participation in clinical trials

Key questions answered in this report:

  • To what extent do people say epilepsy impacts their overall quality of life?
  • What do patients wish others understood about epilepsy?
  • What percentage of patients see a neurologist or epileptologist for epilepsy treatment?
  • What treatments have the highest aided brand awareness among patients?
  • What percentage of patients have undergone VNS or other surgery?
  • How many patients feel their epilepsy is well-controlled on their current treatment plan?
  • What percentage of patients are likely to switch or add new treatments in the next six months?
  • What treatments have patients discussed with their HCP?
  • What are the top online resources people with epilepsy use to find information?
  • What kinds of content and information do patients search for?
  • What percentage of patients search for information on treatment options?

Methodology

The report consists of:
  • A 20-minute online quantitative survey, covering demographics, comorbidities, quality of life/impact, HCP interactions, as well as treatment awareness, experiences, and discussions
  • Qualitative patient insights from open-ended responses
Additional details:
  • Fielded: January 16, 2023 to April 14, 2023
  • Convenient sample of 556 respondents diagnosed with epilepsy
  • Respondents are age 18+, living in the U.S., and are recruited from proprietary online health communities and recruiting partners

Table of Contents

Methodology

Respondent Demographics

Research Highlights

Condition Status and Quality of Life
  • Types of Seizures
  • Symptoms Experienced
  • Impact on Quality of Life
  • Qualitative Patient Insights
Information-Seeking Behaviors
  • Resources Used to Manage Health
  • Types of Content/Information Sought
Treatment Awareness and Experiences
  • Primary HCP Seen for Epilepsy Care
  • Aided Brand Awareness of Treatments
  • Treatment Usage
  • Condition Control on Current Treatment and Clinical Trial Interest
  • Treatment Discussions with HCP
Appendix with All Data Charts and Distributions

Companies Mentioned

Brands and treatments mentioned in this report include:
  • APTIOM® (eslicarbazepine acetate)
  • Ativan® (lorazepam)
  • BANZEL® (rufinamide)
  • BRIVIACT® (brivaracetam)
  • CARBATROL® (carbamazepine)
  • Clonazepam (KLONOPIN®, Epitril®, Rivotril®)
  • DIACOMIT® (stiripentol)
  • DIAMOX® (acetazolamide)
  • Diastat® (diazepam rectal gel)
  • EPIDIOLEX® (cannabidiol oral solution)
  • Epitol® (carbamazepine)
  • FELBATOL® (felbamate)
  • FINTEPLA® (fenfluramine)
  • FYCOMPA® (perampanel)
  • GABITRIL® (tiagabine hydrochloride)
  • Inovelon® (rufinamide)
  • KEPPRA® (levetiracetam)
  • LAMICTAL® (lamotrigine)
  • LIBERVANT™ (diazepam)
  • Luminal® (phenobarbital)
  • LYRICA® (pregabalin)
  • Mysoline® (primidone)
  • NAYZILAM® (midazolam nasal)
  • NEURONTIN® (gabapentin)
  • Onfi® (clobazam)
  • Oxcarbazepine (TRILEPTAL®, Oxtellar XR®)
  • Phenytoin (Dilantin®, Epanutin®, PHENYTEK®)
  • POTIGA® (ezogabine)
  • Roweepra® (levetiracetam)
  • SEIZALAM™ or Versed® (midazolam)
  • SYMPAZAN™ (clobazam)
  • Tegretol® (carbamazepine)
  • Topiramate/Topiramate XR (TOPAMAX®, QUDEXY XR®, TROKENDI XR®)
  • Tranxene® (clorazepate)
  • Valproate or valproic acid (eg, DEPAKOTE®, DEPAKENE®, Convulex®, Orfiril®, Valporal®)
  • VALTOCO® (diazepam nasal)
  • VIMPAT® (lacosamide)
  • Xanax® (alprazolam)
  • XCOPRI® (cenobamate)
  • Zarontin® (ethosuximide)
  • ZONEGRAN® (zonisamide)