There is so much more society can do to allow people with disabilities to live fuller lives.”
As one of the top pediatric orthopedic surgeons in his field, Unni Narayanan is passionate about improving mobility and reducing pain for the young patients in his care, many of whom are children with cerebral palsy.
But his dedication doesn’t end there. With a background in clinical epidemiology, the renowned doctor is also carrying out research to identify which treatments work best and understand and define the priorities of patients and their parents.
“I see, treat, and operate on children with CP every week, and a major focus of my work is dedicated to children with CP – it’s almost a subspecialty area in pediatric orthopedics,” says Narayanan. “CP children have a variety of musculoskeletal impairments which can impact how they move or walk. At the more severe end, you have children in wheelchairs and with musculoskeletal impairments that can cause them considerable pain. They can need all kinds of operations to optimize their efficiency. My clinical research is focused on understanding patient priorities and using that to improve outcomes.”
Narayanan, who completed his residency in orthopaedic surgery at the University of Minnesota and his fellowship in pediatric orthopaedics at The Hospital for Sick Children (Sickkids), is a senior scientist at the Sickkids Research Institute, and has spent two decades working in the field. He says his background in clinical epidemiology led him to focus on improving outcomes through clinical research and surgery.
His PSCORE [Priority-Based Scales For Children’s Outcomes – Research & Evaluation] Program at SickKids invites parents and patients to share what is important to them so clinicians can make judgments about whether treatments make a difference.
“We compile evidence to support whether interventions improve the lives of kids and carry out clinical trials to see which treatments work and which work better than others,” he explains. “A major focus is developing measures of those outcomes.”
Narayanan has been involved with the CP Research Network for many years and is a member of our executive board. He was on a sabbatical in the United Kingdom when he first heard about a large research project organized by the network and has contributed ever since.
“One of the network’s first major initiatives was to bring together clinicians from different subspecialty groups and charge them to work together to develop the core outcomes,” he recalls. “I led the orthopedic part of that effort and worked with my colleagues in other disciplines to bring elements together. It was the start of a clinical registry across North America. I continue to be involved in that effort.”
He cites CPRN.org as an essential resource for ensuring multiple institutions can collaborate to use electronic health records to collect data in a structured and standardized way.
“Integrating research into clinical care is the way to go,” he says. “You are collecting data not just in one but in many institutions, which allows you to collate a higher quality of data efficiently. That’s the power a network like CPRN can facilitate.”
As he contemplates what the future of CP treatment looks like, Narayanan says he would like to see advances in preventing the condition before it can occur and that research requires time and resources.
“CP, unfortunately, is permanent. There is no cure. The damage to the brain while developing is irreversible. The Holy grail would be to reverse that,” he says. “The biggest advances being made are the substantial efforts to prevent the damage in the first place. For example, looking at babies that are at high risk and understanding how the brain works. They are the biggest advances. As an orthopedic surgeon, that is far from what I do. I am downstream of the consequences. Advances in prevention require a more sophisticated understanding of the causes.
“Having time dedicated for research is critical. As a surgeon, clinical responsibilities creep into that time. We also rely on grant money. Those dollars are hard to come by. Nether-the-less, I am very fortunate to be where I am. I have an institution that embraces research and values it.”
There is one thing Narayanan believes we could all do right now to improve the quality of life for people with CP – focus on intersectionality in our daily lives.
“While we wait for medical advances, there is so much more society can do to allow people with disabilities to live fuller lives without needing to fix them,” he says. “It’s not so much treating the child but treating society – empowering people with disabilities to allow them to live fuller lives. By adapting the environment to help people with disabilities get around more easily, you create more comfortable, fuller lives for them. You don’t need sophisticated research to do that.”