Dr. Susan Marzolini found that women are less likely than men to access programs despite strokes occurring at the same rate
After having a sudden stroke in early 2019, Carmen Z. worried she may never regain the strength and mobility she’d once taken for granted.
Eager to do whatever she could to help advance her recovery, Carmen, a former patient at the Toronto Rehabilitation Institute, volunteered to participate in an exercise-based stroke rehab study led by Dr. Susan Marzolini.
Four years after her stroke, things are improving for Carmen and she’s more optimistic. She credits many of the gains she’s made to the exercise Dr. Marzolini, a clinician scientist at The KITE Research Institute, prescribed during the study – programming she continues to use today.
“Physical activity has helped me obtain some control over my situation. I think programs like these are so important for both mental and physical health,” she says.
Unfortunately, Carmen is an outlier.
According to Dr. Marzolini, most women who have a stroke don’t participate in the exercise-based rehab programming they need.
But she’s determined to change that.
Dr. Marzolini, also a registered kinesiologist and former professional basketball player, has spent more than three decades working in the field of cardiovascular rehabilitation and research. Most of this time has been dedicated to examining the effects that exercise can have on the health-related outcomes of those who suffer from cardiovascular disease or have had a stroke.
Early in her career, she observed that cardiac patients weren’t being prescribed strength training as part of their rehab programs - something Dr. Marzolini believed they could benefit from. She decided to test her theory and conducted studies to measure the outcomes of cardiac patients who participated in resistance training rehab programs versus those who didn’t.
The answer was clear - to really help these individuals, strength exercises needed to be part of the solution. Her findings earned her the approval to develop a successful training program, that now prescribes resistance training to almost 2,000 cardiac patients each year.
At the same time, Dr. Marzolini, also a practicing clinician, started seeing more stroke patients in her caseload. Having witnessed the success of the cardiac training program, she, along with Dr. Paul Oh, Medical Director of the Cardiovascular Prevention and Rehabilitation Program at UHN, decided to develop a similar program model for stroke rehab. After modifying the cardiac program's resistance and aerobic training components, Dr. Marzolini demonstrated the effectiveness of this type of training again through her research – this time with stroke patients.
But something was missing.
“I started to notice that half as many women were taking part in the program, despite suffering strokes at the same rate as men,” Dr. Marzolini says. Knowing how patient outcomes could be transformed by programs like these, she was troubled to see so few women participating. So why is it that they’re less likely than their male counterparts to get the care they need?
According to Dr. Marzolini, there’s a myriad of reasons. “To begin with, women have a different recovery profile and, they’re on average, six years older than men when they have a stroke, making them more vulnerable from the beginning. They tend to experience greater pain, more depressive symptoms, poorer functional recovery and often suffer chronic and overwhelming fatigue.”
There are also reasons unrelated to physical health, Dr. Marzolini explains.
“They tend to have fewer socioeconomic resources available to them, often live alone and sometimes have difficulty accessing transportation. Those who fall victim to stroke in their younger years may be saddled with dual caregiver responsibilities - looking after both their children and aging parents. All these factors can make participating in a rehab program more difficult.”
However, Dr. Marzolini believes she and her colleagues can work around many of these barriers by borrowing new findings from the field of cardiovascular rehab and recovery.
In November 2022, Dr. Marzolini and an international committee of seven other female experts in the field of cardiovascular health, published Women-Focused Cardiovascular Rehabilitation: An International Council of Cardiovascular Prevention and Rehabilitation Clinical Practice Guideline.
“As a group of women, we put our heads together with a common goal of finding ways for other women to get the benefits of cardiac rehab. We each had a role to play and were supportive of one another throughout the process. It was an incredible collaboration to be part of,” says Dr. Marzolini.
Under the leadership of Dr. Sherry Grace, a fellow KITE researcher, and expert in the field, the team worked together to create the guideline that instructs clinicians on how to best care for female cardiac patients and deliver women-focused programming. Its 15 recommendations include best practices for referring female patients to rehab and emphasize the importance of identifying how, and in what settings, programs can be delivered to help women feel more comfortable participating.
Included in these recommendations was the first guideline for women with a stroke diagnosis participating in cardiovascular rehabilitation. Dr. Marzolini points out that we will be able to build on that guideline, but we need to know more about women’s stroke recovery.
Unfortunately, it’s an area that’s been understudied, because, as with rehab programs, participation by women in stroke research is minimal. According to Dr. Marzolini, women have been shown to represent as little as 17 per cent of participants in some clinical trials, which makes identifying stroke-specific rehab recommendations difficult.
“Right now, some study results aren’t generalizable because we don’t have equal participation from women. We can’t tailor solutions to them without knowing what will be most effective,” she says.
But a new research study, EMPOW-HER, is seeking to solve that problem. Spearheaded by fellow KITE researcher and Toronto Rehab Medical Director Dr. Mark Bayley, the study will be led by Dr. Marzolini and her colleague, Dr. Shannon MacDonald.
EMPOW-HER is hoping to uncover what prevents women from getting involved in stroke research and what can be done to increase their participation. If the project is successful, it will teach researchers like Dr. Marzolini how to recruit more women for their studies and will bring them one step closer to providing rehab tailored to them.
According to Dr. Marzolini, work of this kind is encouraged at KITE, and the institute’s director, Dr. Milos R. Popovic, has created a welcoming environment for sex and gender research. “He’s so supportive of our work and women-led research in general,” she says.
When asked what she would like to see come from her stroke research work one day, Dr. Marzolini was quick to answer.
“There are three things. First, I’d like to see modifications made to stroke rehab programs so that anyone who needs exercise and secondary prevention treatment can receive it, regardless of mobility deficits. Right now, 35 per cent of cardiac rehab centres won’t accept stroke patients because of their limitations and these individuals are left without options. There needs to be more funding and training so effective programs are in place to support them.
“Second, I hope there’s greater awareness of sex and gender differences when it comes to treating stroke patients so they can get the care that accommodates their specific needs.
“And finally, I hope to see equal representation of men and women in stroke-related research studies, so we can continue to improve our rehab programs.”
But seeing meaningful results from her work may take years, so staying motivated in the present is important. So, what gives her the greatest satisfaction in her day-to-day work?
“It’s seeing how exercise affects people post-stroke. Just a little change can make a huge difference and mean so much to these men and women. It’s inspiring to see them work so hard and feel more in control of their lives.”
 | KITE's partnership with Centennial College KITEworks Magazine is an annual collaborative project between Centennial College's Professional Writing- Communications and Photography programs and KITE. The stories, experiences and photographs shared in this year's edition of the magazine give an unfiltered look into how KITE has reimagined rehabilitative care. Come and explore how KITE works! |