The impact of epilepsy on children and adult patients’ lives: Development of a conceptual model from qualitative literature

AimThis study aimed to develop a conceptual model of the impact of partial onset or generalized epilepsy on children and adults in order to guide the identification of endpoints that capture patient perspectives in new treatment trials.MethodsA systematic literature search was conducted in Embase and Medline to identify qualitative research reporting the impact of epilepsy on child and adult patients’ lives. The search identified 20 publications describing 18 qualitative studies. Qualitative results were extracted from these publications into structured summary tables separately for impact on children and adults.ResultsResults tables were reviewed by two qualitative researchers who identified 23 concepts/areas of impact. Concepts were largely universal between child and adult studies, although concept content did vary between age-groups, for example child relationship concerns were focused on developing friendships and problematic family relationships. For adults the concerns were problematic relationships with spouse or partner and fulfilling the family roles. Concepts influenced directly by epilepsy were cognitive, physical and seizure effects, other concepts such as future hopes, burden and self-esteem were influenced more indirectly by impact on other concepts. The 23 concepts were linked to form a conceptual model of the impact of epilepsy for patients guided by qualitative results reported by studies.ConclusionThe conceptual model suggests potential areas of patients’ lives that may be enhanced by effective treatment and allows for concepts of concern to both children and adults to be identified and explored as potential endpoints in trials of new epilepsy treatments.