Funding outcome

There is no more common a time in life for a stroke to occur than during the newborn and perinatal time frame (28 weeks gestation to 1 month of age). Perinatal strokes can occur in-utero or around the time of birth, contributing equally to the total incidence of stroke in the newborn. The incidence is 4/1000 live births (136 newborns per year in Alberta). Twenty-five % of all pediatric strokes occur in the perinatal period. Mortality ranges from 6-13%, and 75% of survivors are left with challenges which include hemiplegic cerebral palsy, cognitive difficulties, behavioral abnormalities, language and verbal memory problems, and epilepsy. While quality of life has been assessed in child survivors of pediatric stroke, adults and adolescent survivors transitioning to adulthood have largely been neglected. Transition to adulthood clearly brings with it dramatic personal challenges in confidence, responsibility, independence, post-secondary education, work environment, sexuality and developing one's own nuclear family. Most studies have not explored the patients' Health-Related Quality of Life (HRQoL), a measure that allows the patient to rate their own 'perception of their position in life'. This measure considers aspects of the individuals' life on individual, social, economic, and community levels. HRQoL has been demonstrated to be of greater importance to the patient than the results of their physiological testing. As part of the Alberta Perinatal Stroke Program (APSP), we have accumulated the largest cohort of neonatal strokes in the world. Many have now reached adulthood. We will evaluate HRQoL of adult and adolescent survivors of neonatal stroke. We will also examine their levels of education, employment, sexual behaviour, and the socialization of these individuals, and determine the impact of these domains on their HRQoL. This information will provide the data required to put preventive measures in place to allow these young adults to enter society on an equal footing