ABBREVIATIONS
ICFInternational Classification of Functioning, Disability and Health QOL Quality of life 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.Epilepsy can have a profound effect on health and quality of life (QOL). It may hinder the development of independence, social functioning, peer relationships, and self-esteem, all of which are particularly important during adolescence. [1][2][3] In this developmental period, individuals form a sense of identity and autonomy, relying heavily on peer relationships. 4 Adolescents begin to make educational, career, and intimate relationship decisions. 4 The challenges facing young people with epilepsy persist into adulthood; for example, marriage and employment rates are reported to be lower in adults with childhood-onset epilepsy than in the rest of the population. 5 Biomedical diagnosis alone does not accurately predict health outcomes, the level of care required by patients, work performance, or social integration. 6 To better examine these outcomes, life and health challenges must be identified, analysed, and categorized. Recognition and conceptual classification of these issues may provide insight into the life-course trajectory of individuals with epilepsy and help mitigate long-term outcomes. It is of critical importance to examine these issues from the patient perspective, as the views of patients, parents, and clinicians may differ regarding the value placed on health outcomes and QOL. 7,8 In this review we have used the following operational definitions for the key concepts. Health status is defined as a snapshot of functioning, at ...