KITE Senior Scientist Prof. Catriona Steele is helping put the pleasure back in eating for patients with dysphagia.
After a year of living with a tube that delivered food directly to his stomach, John Schonewille, then 66, had begun to despair that he might never be able to enjoy the everyday pleasure of eating again. Robbed of his ability to swallow by late complications of a stroke, Schonewille had faithfully carried out rehabilitation exercises prescribed by a speech-language pathologist (SLP), but when he tried eating again, food particles ended up in his lungs, causing pneumonia. Faced with the prospect of remaining permanently dependent on a feeding tube, “my life had no hope,” he recalls.
Schonewille, who now lives in Haliburton, is among the estimated 10 to 13 per cent of Canadians over age 45 with swallowing difficulties, known medically as dysphagia. The process of swallowing requires a complex combination of nerves, muscles and parts of the brain to work together. When just one element doesn’t function properly – due to anything from a stroke to cancer to multiple sclerosis – a person with dysphagia might choke on foods and liquids, and in some cases, might even be unable to swallow their own saliva.
Desperate, Schonewille’s husband, Harry Lewis, reached out to their SLP, Susan Watt, who recommended they see Prof. Catriona Steele, a senior scientist and Director of the Swallowing Rehabilitation Research Laboratory at UHN’s KITE Research Institute, who is also an SLP. According to Prof. Steele, Schonewille’s situation isn’t unique.
“The unfortunate thing is that there is very little therapy available for people with swallowing impairment in Ontario, but really, anywhere,” she notes. “And we don’t have a lot of good data to say which therapies work and which don’t work.”
With repeated testing, Prof. Steele finally discovered the ring-shaped muscle that’s supposed to relax when food or liquid approaches was staying stubbornly closed. Only by turning his head just the right way and doing a maneuver called an “effortful swallow” could Schonewille make the muscle open, and at first only briefly before he tired.
Dissatisfaction with dated tools
In recent years, Prof. Steele has quietly transformed the assessment and treatment of swallowing disorders. Her interest in the field was sparked while at her first job as the only SLP for 600 residents at Baycrest's Home for the Aged an academic health sciences centre for older adults in north Toronto, between 1991 and 1994. Swallowing problems were common among the aging population there, as older people are more likely to develop the condition, and she saw the enormous impact not being able to eat or drink normally could have on people’s lives.
“Food and drink are central to the way that we live our lives,” she explains. “I can’t think of a rite of passage that doesn’t involve eating together or drinking together.”
During this same period, Prof. Steele also became frustrated with the limited tools for assessing and treating dysphagia.
Take the test that SLPs use to try and pinpoint exactly what part of the complex swallowing process has gone awry. Using fluoroscopy – a sort of X-ray movie – an SLP monitors the patient as they swallow to determine the source of their difficulty. The problem with fluoroscopy is that it’s up to an individual SLP to interpret what they see, making test results subjective, rather than objective.
Schonewille and his husband Harry Lewis.
Taking a more standardized approach
One focus of Prof. Steele’s research has been to create an objective grading system for this fluoroscopy test. With nine key events to look for during swallowing, any SLP can use strategies like measuring the position of certain structures in the throat, and the time between each of these events, to arrive at the same score as another SLP. The goal, she notes, is to provide results similar to a blood test, with low, high and normal ranges for swallowing.
Prof. Steele and her team are well on their way to success. “We have developed reference ranges for healthy adults aged 20 to 82, and our current work is collecting a whole new sample to validate those references,” she says.
Prof. Steele also uses this objective system to map out how specific interventions affect those results. “For example, if we ask someone to swallow with their head tucked down as opposed to in a normal position, how does that change the numbers?” she says.
Similarly, she’s looking at what happens when liquids are thickened to one of four standardized consistencies, or when food is chopped or mashed to different degrees – and which is best for each swallowing problem. “We’re mapping swallowing right across the continuum of texture,” she explains.
Putting pleasure back in eating
Prof. Steele hopes to create a more tailored approach to modifying foods and beverages, so they’re suited for an individual patient’s needs. Until now, “we had one tool in our kits, which was to thicken everybody’s liquids and purée their foods. It’s still true that most clinicians jump very easily to thickening and puréeing. It’s a very blunt instrument,” she says. “I would love to be able to offer people with swallowing impairment more options in their diets, but also offer them treatments that would get them back to eating more variety and enjoying food and liquid like most of us do.” For example, further research using Prof. Steele’s scoring method could improve treatments by measuring the effectiveness of different exercises for a given swallowing problem.
That said, it is still possible to prepare puréed foods in such a way that they’re visually appealing and tasty. For example, Prof. Steele and her team once worked hand-in-hand with the chef at a foodie patient’s favourite restaurant so she could enjoy a family birthday dinner before she eventually regained her ability to eat regular foods. “The chef prepared a gorgeous meal that was all texture modified. She thoroughly enjoyed it – we all thoroughly enjoyed it,” she says.
Working with Prof. Steele, Schonewille has gradually regained sufficient swallowing ability to eat foods prepared to a certain consistency, and he’s continuing to improve. He can now enjoy such dishes as soups, ground meats and his favourite lasagna brimming with finely chopped vegetables.
“The types of foods are starting to expand, because the more I eat, the better I can eat,” he says. “That’s all due to Dr. Steele.”
This Is KITE is a storytelling series that aims to excite and inspire audiences as well showcase the Institute’s people, discoveries and impressive range of research. The campaign will feature monthly stories and videos that chronicle key projects under KITE’s three pillars of research: Prevention, Restoration of Function, and Independent Living/Community Integration.