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This study tested the feasibility of using the Books Beyond Words booklet to help adults with learning disabilities manage epilepsy. Results will inform a larger trial on improving epilepsy management and quality of life.

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Area of Science:

  • Neurology
  • Health Services Research
  • Disability Studies

Background:

  • Epilepsy is a common neurological condition, particularly challenging in individuals with learning disabilities due to frequent seizures and treatment resistance.
  • The Books Beyond Words booklet offers a visual aid to assist people with learning disabilities in managing epilepsy and enhancing their quality of life.
  • Current management strategies for epilepsy in individuals with learning disabilities require improvement, highlighting the need for accessible interventions.

Purpose of the Study:

  • To conduct a randomized controlled feasibility trial to assess the methodology, design, and acceptability of the Books Beyond Words booklet for epilepsy management in adults with learning disabilities.
  • To gather essential data for planning a large-scale, definitive randomized controlled trial.
  • To explore the potential of the Books Beyond Words intervention to improve epilepsy management and quality of life.

Main Methods:

  • A two-arm, single-centre randomized controlled feasibility design over 20 months across five UK epilepsy clinics.
  • Recruitment of 40 adults with learning disabilities and epilepsy, randomized to the Books Beyond Words booklet plus usual care or usual care alone.
  • Collection of quantitative data (demographics, seizure control, quality of life scores, resource use) and qualitative data on feasibility and acceptability.

Main Results:

  • Feasibility and acceptability data were collected on study procedures and the Books Beyond Words booklet.
  • Quantitative data included participant recruitment, discontinuation rates, quality of life (Epilepsy and Learning Disabilities Quality of Life scale), seizure severity, and control.
  • Qualitative feedback was gathered to assess the user experience and practical implementation of the intervention.

Conclusions:

  • The feasibility study's outcomes will guide the design and methodology of a definitive, adequately powered randomized controlled trial.
  • This research aims to determine the impact of the Books Beyond Words intervention on improving epilepsy management in people with learning disabilities.
  • The findings will contribute to evidence-based strategies for supporting individuals with both epilepsy and learning disabilities.