Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: a scoping review

AIMS: The aims of this study were to (1) search the literature in order to identify the challenges facing adolescents and emerging adults with epilepsy; and (2) categorize these issues within both the framework of the International Classification of Functioning, Disability and Health (ICF) and an empirical model of quality of life (QOL) in childhood epilepsy. METHOD: We systematically searched PsycINFO, Ovid MEDLINE and Web of Science for studies reporting on QOL and health identified in people with epilepsy aged 12 to 29 years. Studies were limited to those that were published in the last 20 years in English, presenting the patient perspective. Data were extracted and charted using a descriptive analytical method. Identified issues were classified according to the ICF and QOL frameworks. RESULTS: Fifty four studies were identified. Another 62 studies with potentially useful information were included as an addendum. The studies highlight a range of psychosocial issues emphasizing peer acceptance, social isolation, and feelings of anxiety, fear, and sadness. INTERPRETATION: The ICF and QOL constructs represent useful starting points in the analytical classification of the potential challenges faced by adolescents with epilepsy. Progress is needed on fully classifying issues not included under these frameworks. We propose to expand these frameworks to include comorbidities, impending medical interventions, and concerns for future education, employment, marriage, dignity, and autonomy.