Principal Investigator: Lucyna Lach
Co-Investigators: M. Shevell, L. Carmant, G. Ronen, M. Boyle, C. Cunningham, P. Rosenbaum & D. Streiner
Funding Source: Ministere de la santé et des services sociaux
Funding Source: Canadian Institutes of Health Research
Funding Source: Fonds de recherché sur la société et la culture & Centre de recherche interdisciplinaire en réadaptation du Montréal
Funding Source: McGill – Research and International Relations / Faculty of Medicine / Research Institute of the
McGill University Health Centre
Epilepsy is one of the most common neurological disorders in childhood and is increasingly understood as a complex, pervasive, neuro-behavioural and social condition. Health policy is shifting away from physician driven disease management to a Chronic Disease Model where the patient and his family act as the day-to-day managers of the health condition while health care professionals are the coach. Outcomes studies conducted in the treatment of epilepsy typically evaluate success of treatment using medical parameters. Not much is known about other outcomes such as quality of life and participation both of which are at the heart of how children, adolescents, and their caregivers define as important to them. Even less is known about the determinants of quality of life and participation in these children. The primary objective of this longitudinal study is to quantify the relative contributions of biomedical and psychosocial factors to the physical health, functional status, and quality of life outcomes among children with epilepsy. Data is being collected at the Montreal Children’s Hospital and at Ste. Justine. Both sites are part of a larger pan-Canadian study funded by the Canadian Institutes of Health Research. The findings will have both policy and service delivery implications.