Welsh Centre for Learning Disabilities, Cardiff University, Cardiff, Wales, United Kingdom, Epilepsy Centre for Children and Adolescents, Schön Klinik Vogtareuth, Vogtareuth, Germany, Spire Leicester Hospital, Leicester, United Kingdom
Although Lennox-Gastaut syndrome (LGS) typically begins during childhood, it frequently persists through adolescence and on into adulthood. It may also, rarely, have late onset during adolescence or adulthood. Longitudinal studies have highlighted that the “typical” features of LGS observed during childhood evolve and change over time, so that by adulthood it might be difficult to recognise LGS in previously undiagnosed patients. Approaches to treatment must therefore adapt to the changes in a patient's condition as they progress through life. Effective management of LGS requires a global approach to care that not only encompasses seizure control, but also the management of co-morbidities associated with the condition, such as cognitive and behavioural problems, sleep disturbances and physical disability, together with the specific educational and psychosocial needs of the individual. This is particularly relevant during adolescence, when patients have to cope with a host of additional issues alongside those relating to their epilepsy. During all stages of life, management of LGS must carefully balance the need for treatment against its side effects, with the patient's overall quality of life always being the primary focus. The transition of care from paediatric to adult services presents important challenges for patients, their families and healthcare providers, and requires particular consideration to ensure that it is as smooth as possible. It also presents an important opportunity to review and reappraise a patient's condition, treatment and other longer-term needs as they journey into adulthood.