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Psychoeducational Programs for Patients with Epilepsy

  • Review Article
  • Published:
Disease Management & Health Outcomes

Abstract

Epilepsy is a common neurological disease, which affects people of all ages. Patients often have deficits regarding their knowledge of epilepsy. Many of them have recurrent seizures, psychosocial, and emotional problems and report restrictions in daily living as a result of their epilepsy. Meanwhile, a variety of psychoeducational programs have been developed with the intention to improve knowledge, coping with epilepsy, quality of life, compliance, and health status.

This review article discusses the content and designs of formal patient educational programs for persons with epilepsy and reviews their role in improving patient outcomes. A systematic research of medical and psychological literature reveals that a sizeable amount of literature has been produced within the last decade that focuses on (psycho-) educational programs for adults, adolescents, and children with epilepsy as well as their families. These educational programs vary considerably in regard to content, didactic approach, and objectives. It is sometimes difficult to differentiate educational programs from psychological treatments or other interventions (e.g. by specialist epilepsy nurses). Information given about the theoretical frameworks guiding interventions, teaching strategies, and methodological approach of the programs is often sparse or lacking.

The crucial point is that only very few educational programs have been evaluated in a randomized controlled trial. Furthermore, the methods of evaluation (e.g. questionnaires, inclusion and exclusion criteria, randomization, follow-up period) vary substantially and sometimes the number of subjects included in the study is too small for sufficient statistical evaluation.

Overall, from the small number of evaluated programs it is evident that educational programs can improve epilepsy-related knowledge, improve the management of seizures, and reduce misinformation and misconceptions about epilepsy. They can support adults, adolescents, and children with epilepsy and their families and enable them to cope with the disease; they can sometimes also reduce seizure frequency and improve compliance with antiepileptic drugs. The effects on emotional disorders (e.g. depression) and quality of life are less obvious.

Evaluated or standardized psychoeducational programs are available for specific target groups of patients with epilepsy. The review indicates that it is reasonable to perform or to adapt these educational programs for the benefit of the patients. Future research should focus on controlled evaluation studies of educational programs.

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Acknowledgments

No sources of funding were used to assist in the preparation of this review. The authors have no conflicts of interest that are directly relevant to the content of this review.

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Authors and Affiliations

  1. Gesellschaft für Epilepsieforschung, Maraweg 13, Bielefeld, D-33546, Germany

    Theodor W. May (Psychologist, Mathematician, Private Docent)

  2. Epilepsy Centre Bethel, Bielefeld, Germany

    Margarete Pfäfflin

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  2. Margarete Pfäfflin
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Correspondence to Theodor W. May.

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May, T.W., Pfäfflin, M. Psychoeducational Programs for Patients with Epilepsy. Dis-Manage-Health-Outcomes 13, 185–199 (2005). https://doi.org/10.2165/00115677-200513030-00004

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