Oriana Shaw

Supervisor: Jerome Yager

Project: Quality of life in adults who experienced childhood stroke


Edmonton, AB

Degree program:

Doctor of Medicine

What do you get to work on throughout your studentship?

I am fortunate to have been given the opportunity to be involved in this project from start to finish. I have assembled the ethics proposal, which has been accepted, and have been involved in choosing which questionnaires to use to best assess the variables we are interested in. I will recruit study participants from the Alberta Perinatal Stroke Project (the largest cohort of neonatal strokes in the world) and serve as their main contact throughout the study. I will gather and analyze the data, and finally, put together a manuscript with our findings. I also plan to present these findings at the WCHRI Research Day, and potentially other conferences. In addition to the work outlined above, I am peripherally involved in several other clinically related studies. These include a study of perinatal stroke and infantile spasms, for which a manuscript is now being completed, a study of iron deficiency and stroke, and a study exploring the use of the transcranial doppler technique to assess children at risk for stroke.

What's been the best part of your experience so far?

I have already spoken to several patients over the phone, and I have been struck by how enthusiastic many of them have been about participating in this project. These young adults have busy lives and, in some cases, children to take care of, yet they eagerly make time to answer dozens of personal questions for the sole purpose of helping improve the experiences of others with similar health challenges. I have found these responses quite touching and inspiring. As well, given that Dr. Yager is a clinician-scientist, I have had the opportunity to attend his perinatal stroke clinics, where I am able to experience, first-hand, the effects of stroke in children. This provides very real-world insights to my research and ongoing training in medicine.

Lay abstract:

Perinatal strokes (from 24 weeks of pregnancy to one month after birth) occur in approximately four out of 1,000 live births and account for a quarter of all pediatric strokes. Mortality ranges from 6-13%, and 75% of survivors have challenges including hemiplegic cerebral palsy, cognitive and behavioural difficulties, language problems, and seizures. While quality of life has been assessed in children following pediatric stroke, their transition to adolescence and adulthood has largely been overlooked. This transition brings dramatic personal changes in confidence, responsibility, independence, sexual behaviour and may include post-secondary education, different work environments, and developing one's own nuclear family. Health-related quality of life (HRQoL), allows patients to rate their "perception of their position in life" in relation to their health, considering aspects of the individuals' life on individual, social, economic, and community levels. HRQoL has been shown to be of greater importance to patients than their physiological testing. The Alberta Perinatal Stroke Project has accumulated the largest cohort of neonatal strokes in the world, and many of these participants have now reached adulthood. We will provide questionnaires to evaluate their HRQoL, and several factors that may underlie it, including levels of education and employment, sexual behaviour, and interpersonal relationships. This information will provide the data required to put preventive measures and therapeutic strategies in place to allow these young adults to enter society on a more equal footing.