Teenagers with epilepsy: a service evaluation of a teenage epilepsy clinic.

Background: The quality of life (QoL) of teenagers with epilepsy is of primary importance. Ensuring effective seizure control as well as providing holistic care to meet the needs of individuals with epilepsy is essential, to prevent psychological or social problems as a result of their epilepsy. Aim: The aim of this dissertation is to evaluate a well-established Teenage Epilepsy Clinic in relation to epilepsy impact, generic health-related quality of life, teenage views on the outpatient clinic and seizure knowledge; with a view to guide future practice within the clinic Methods: Four questionnaires were administered to teenagers and an accompanying parent/guardian attending teenage epilepsy clinics: (1) The Young Person‟s Impact of Epilepsy Scale examined the impact of epilepsy and epilepsy treatment; (2) The Teenage Views on Outpatient Clinic and Seizure Knowledge Questionnaire gained an understanding of views on the clinic itself and teenager knowledge of epilepsy; (3) The teenager report of The PedsQL Paediatric QoL Inventory and (4) the parent report using the same tool were used to evaluate perceptions of health related QoL in relation to physical, emotional, school and social functioning held by teenagers and their parents respectively. Two datasets were implemented: the current dataset consisting of data sourced from the current evaluation and the merged dataset consisting of some additional data sourced from a previous evaluation. Results: The current dataset consisted of a total of 40 participants (18 males and 22 females, mean age 15 years 6 months), whilst an additional 28 participants were used to create the merged dataset. Mean impact of epilepsy scores of 25.3 (sd 21.2) and 23.9 (sd 20.8) were calculated using the current dataset and merged dataset respectively. Suggesting most teenagers do not perceive their epilepsy as having a big impact of their relationships, activities and health. Epilepsy impact scores were higher (worse) in relation to repeat clinic attenders and in male clinic attenders. Conversely PedsQL scores were higher (better) in all four HRQoL domains in relation to repeat clinic attenders and in teenagers over 16 years of age. Additionally female clinic attenders scored higher (better) than male clinic attenders in relation to all four HRQoL domains, though only significantly higher in school functioning (females 67.3, males 53.6, p=0.045). Quality of life appears to be most affected in terms of (Teenage and Parent Reports) emotional functioning (67.4 and 58.6), followed by school (68.5 and 61.0), social (75.5 and 70.1) and physical functioning (80.9 and 75.5). The way in which quality of life is affected by epilepsy is highly correlated between teenagers and their parents although in each domain teenagers appraised their quality of life higher than their parents. Participants rated the clinic positively with 88% reporting it as „good‟ or „great‟. Overall participants reported a good knowledge of seizures and understood their epilepsy in terms of the symptoms it produced rather than as a „diagnosis‟ or „label‟. Conclusions: Teenage clinic attenders with epilepsy seem to cope well, and better than their parents believe they can cope, with what can be a potentially debilitating chronic illness. There remain an important minority who perceive their epilepsy as having a negative impact on their wellbeing and functioning. Findings additionally highlight a greater need in male teenagers with epilepsy than females, in concordance with the wider literature. Services should consider targeting interventions aimed at improving the quality of life of this group