Abstracts

Rationale: Adolescence is a time of physical, emotional, and social change. It is often a very challenging time in life, especially for young people living with a chronic disease. There is growing interest in developing transition programs to facilitate a comprehensive transfer from pediatric care to adult care. Although many models of care have been implemented, there are currently no guidelines or standards of practice outlining what these programs should entail. Studies have shown that adolescents with epilepsy have decreased quality of life when compared to healthy peers. The goal of this literature review was to identify causes of impaired quality of life in adolescents with epilepsy in order to develop and incorporate social interventions into a new Transition Program in a Level IV Comprehensive Epilepsy Center.Methods: A broad search of medical, nursing and psychological literature was completed using the keywords “quality of life” AND “adolescents” AND “epilepsy” within the title. Results were limited to articles written within the past five years in the English language. Seven articles were chosen for further review based on relevance to objectives. These articles were reviewed to identify methods of evaluating quality of life, reported quality of life in adolescents with epilepsy and identified factors associated with decreased quality of life.Results: Age of participants in studies ranged from 3-18. Multiple different scales were used to measure quality of life in adolescents with epilepsy; including CHQ (with self-reported and parent reported versions), KINDL-R, QOLIE-48, PedsQL, ComQol-S and QOLCE. In all articles, quality of life was decreased in children and adolescents with epilepsy when compared to healthy controls. There was no difference between boys and girls. Factors strongly associated with impaired quality of life included frequent seizures, social support, depression, anxiety, impaired communication and leadership, and duration of illness. The incidence of depression in adolescents with epilepsy was found to be > 30%.Conclusions: Adolescents with epilepsy reported significantly lower quality of life when compared to healthy peers. While physical aspects of disease, such as seizure frequency and illness duration, contributed to negative quality of life, many psychosocial aspects were also strongly associated with poor quality of life in this population. This review has demonstrated a need for social support, psychological evaluation and treatment for this vulnerable population. Incorporating a screening for depression and prompt referral to a mental health professional into a transition program, as well as providing social opportunities for adolescents with epilepsy may help improve quality of life as patients transfer to adult care.