Institute of Medical Science (MSc); Department of Ophthalmology and Vision Science
Dr. Elise Héon and Dr. Ajoy Vincent; The Hospital for Sick Children
Development of Patient-Reported Outcome Measures for Pediatric Patients with Inherited Retinal Diseases
Description of your Research:
The assessments of eye disease are technical in nature; there is much focus on the structure and function of the eye. Little is known about the health outcomes defined by the patient's experience, such as the condition's impact on daily life and quality of life. This is especially important when understanding the efficacy of treatments (e.g., Voretigene neparvovec––gene therapy) on vision. Is the improvement only physiological or are there also meaningful differences in the individual's life? We aim to develop patient-reported outcome measures (PROMs) for pediatric patients with inherited retinal disease, a group of genetic conditions that typically cause progressive photoreceptor loss, which can lead to vision impairment. These PROMs are questionnaires that measure health outcomes defined by the patient and will provide ophthalmic clinicians with better insight into their patient's condition and daily life.
Why did you Choose this Department?
My previous experiences were patient-centric; I worked in geriatric, cardiothoracic, ultrasound and radiology, family, and fracture clinics. When working with any patient, taking an interdisciplinary approach seemed to better address the patient needs and preferences. The Institute of Medical Science has a great program to foster an interdisciplinary mindset when conducting medical research. As such, the department and project that I am doing really spoke to me.
When Did you Start your Research Experience?
I started my research journey in 2017, when I worked as a research assistant at Western University and the Lawson Health Research Institute. When I began my MSc in Medical Science at the University of Toronto, I explored my interests and found my true calling in patient-centered care work.
Why did You Choose this Supervisor?
First, I would like to say that Drs. Elise Héon and Ajoy Vincent are incredibly compassionate people, which translates really well into their patient care and the lab environment. This is especially important because the theme of my research is patient-centered care, a framework in medicine that focuses on incorporating the patient’s needs and preferences. Learning from them took my research to the next level. They are also some of the most prominent experts in inherited retinal diseases, so as a student who wants to know more, I can access the resources I need. I am happy to have the chance to work with them.
What’s your Experience with Research?
The experience has been wonderful overall! I get to combine medical research with social science, so I am in the perfect setting. As well, given the recent increase in the use of Zoom and other conference tools, there have been so many knowledgeable researchers and mentors I have met, both within the University of Toronto and internationally, all thanks to the nature of my research.
How’s the Social Experience with Research?
Both my lab members and the researchers I have met on my own have made for a great social experience. Further, there are fun events hosted by my department and the Hospital for Sick Children that allow me to connect with other students and researchers.
What’s your Future Career Plans?
Continuing to promote patient-centered care.
“Life is a journey, not a destination.” Ralph Waldo Emerson
There are so many opportunities to be involved in fascinating projects, both in research and extracurriculars, so keep an eye out for them!