Despite the higher prevalence of osteoarthritis (OA) among women, they are less likely than men to receive treatment due to multiple intersecting issues such as gender roles, cultural norms, and socioeconomic constraints. This is particularly true for racialized women. Researchers from the Toronto General Hospital Research Institute (TGHRI) have uncovered approaches to rectify this disparity in care.
OA is the most common type of arthritis; there is no cure, and it often worsens over time. OA symptoms such as chronic joint pain and functional impairment restrict the activities of daily living and can contribute to other chronic conditions such as depression, diabetes, and heart disease. First-line management can include physical activity, pharmacologic and non-pharmacologic pain control, self-management programs, and more, while second-line management includes surgery or joint replacement.
Effective early management can prevent or delay the progression of OA. However, women, especially those from racialized or immigrant backgrounds with lower education or income, are less likely than men to receive both first- and second-line interventions. Additionally, OA care of diverse women, and strategies to improve the quality of their care is understudied.
“Due to the lack of research on treatment barriers from the perspective of diverse women with OA, our team sought out strategies for delivering person-centred OA care for women of colour through interviews with patients, clinicians, and health system managers,” says Dr. Anna Gagliardi, Senior Scientist at TGHRI and lead author of the study.
“We interviewed 27 women who varied by ethno-cultural group, age, and education level as well as 31 health care professionals and conducted a content analysis to identify what defines person-centred OA care, barriers to care, and strategies to support equitable access to person-centred OA care,” continues Dr. Gagliardi.
The study revealed numerous approaches to person-centred OA care as well as 22 barriers to access and 18 multi-level strategies needed to improve access. Overall, women and clinicians identified similar key components of person-centred care including fostering a healing relationship, exploring the impact of OA on daily life, enabling self-care, and more.
The three participant groups also identified similar barriers to OA care. Importantly, the barrier most emphasized by women was having their OA dismissed by clinicians, and this was not recognized by clinicians or executives/policy-makers.
Participants identified several key strategies among all levels of health care to improve OA care for diverse women. These included educational sessions and materials that accommodate cultural norms and are offered in different languages and formats; medical and continuing education on OA for clinicians, especially on providing OA care tailored to intersectional factors; and public health campaigns to raise awareness of OA as well as public funding for therapy.
Dr. Gagliardi emphasizes, "This research contributes to closing a crucial gap in optimizing OA care for disadvantaged and understudied groups. Ongoing efforts must explore the best ways to implement these strategies with collaboration across sectors and active engagement with diverse women."
This work was supported by the Arthritis Society and UHN Foundation.
Dr. Anna Gagliardi is Professor at the University of Toronto (Department of Surgery; Institute of Health Policy, Management & Evaluation; Institute of Medical Science).
Gagliardi AR, Abbaticchio A, Theodorlis M, Marshall D, MacKay C, Borkhoff CM, Hazlewood GS, Battistella M, Lofters A, Ahluwalia V. Multi-level strategies to improve equitable timely person-centred osteoarthritis care for diverse women: qualitative interviews with women and healthcare professionals. Int J Equity Health. 2023 Oct 7;22(1):207.
Person-centred care involves tailoring health care interactions and treatment to individual needs and preferences. For OA, this can include fostering a healing relationship, active listening and exploring the impact of OA on daily life.
Congratulations to Dr. Frances Chung, winner of UHN’s 20th annual Inventor of the Year Award.
Dr. Chung is being recognized for her innovative work re-imagining the standards of care for patients living with sleep apnea through the development of the STOP-Bang clinical questionnaire—a screening tool originally created to help identify patients with undiagnosed sleep apnea for the prevention of critical incidents during surgery.
Sleep apnea is the most prevalent sleep-breathing disorder that is often left undiagnosed and is associated with other health conditions such as coronary artery disease, hypertension, diabetes mellitus, renal disease, congestive heart failure, and even cognitive impairment.
Dr. Chung developed the STOP-Bang tool after hypothesizing that some critical incidents and deaths post-surgery might be related to sleep apnea due to its obstruction of the upper airway. After conducting sleep studies (polysomnography) on hundreds of patients, she determined that a high proportion of patients had undiagnosed sleep apnea and created the STOP-Bang questionnaire as a simple yet effective way to screen for the disorder.
This simple online tool has a diagnostic accuracy of over 80% as validated by laboratory polysomnography. The STOP-Bang questionnaire has now been adopted as a standard diagnostic tool for sleep apnea in 500 institutions across the world.
“The rapid scaling of Dr. Chung’s revolutionary yet simple STOP-Bang clinical tool is changing the vast landscape of sleep apnea diagnosis and treatment, ultimately contributing to A Healthier World,” says Dr. Brad Wouters, Executive Vice President of Science and Research at UHN. “Other sleep scales exist out there, but none are simple enough for patients to do at home with such a high degree of accuracy.”
“The success of STOP-Bang proves that even a clinical tool such as a questionnaire can be an important invention when you consider both the incredible patient impact and widespread commercialization potential,” says Laura Farran, Principal, Licensing and Commercialization, Biomaterials and Clinical Tools, UHN.
The Inventor of the Year award is sponsored by Commercialization at UHN and recognizes an individual or team whose invention has made a substantial and noteworthy commercialization contribution that is leading to ‘A Healthier World’. Read the full announcement here.
Welcome to the latest issue of The Krembil.
The Krembil is the official newsletter of the Krembil Research Institute. Research at Krembil is focused on finding innovative treatments and cures for chronic debilitating disorders, including arthritis and diseases of the brain and eyes.
Stories in this month’s issue include:
● Reaching Our North Star: The 2023 UHN Research Report focuses our ambition on Our North Star—creating A Healthier World.
● A Royal Tour: UHN welcomes its Patron Her Royal Highness, The Duchess of Edinburgh, for a three-day tour.
● Everything in Its Place: Study uncovers processes that govern the arrangement of light-sensitive cells in the retina.
● Matters of the Brain: Study reveals potential link between structural brain changes and neuropsychiatric symptoms.
● Advancing Arthritis Research: Scientists facilitate osteoarthritis research with detailed analysis of patient data.
● Optimal Sleep, Faster Recovery: Habitual short sleepers may be at an increased risk of developing long COVID.
A recent study led by researchers at the Krembil Brain Institute suggests that short sleep duration may contribute to the development of persistent symptoms of COVID-19, particularly in people with pre-existing medical conditions.
Most people recover fully from COVID-19, but a significant percentage experience lasting symptoms, such as difficulty breathing, fatigue, sleep problems and brain fog. The persistence of these symptoms for more than two months after a person recovers from the acute illness is called post-COVID condition or long COVID.
“Despite nearly 40% of patients going on to experience long COVID, there are still a lot of unknowns about the condition, including what makes one person more susceptible than another,” says Dr. Frances Chung, a Clinician Investigator at the Krembil Brain Institute and ResMed Chair in Anesthesia, Sleep and Perioperative Medicine Research at UHN.
Preliminary evidence suggests that pre-existing medical conditions, including chronic obstructive pulmonary disease (COPD), heart disease and diabetes, increase one’s risk of developing long COVID.
This evidence, together with the known importance of sleep for immune system function, led Dr. Chung to explore whether the odds of developing long COVID are higher among people who have chronic health conditions and whether the impact of these conditions is influenced by sleep duration.
Using an online survey, Dr. Chung’s team collected data from 13,461 adult men and women in 16 countries, 2,508 of whom reported having COVID-19. Of the 1,505 people who reported experiencing long COVID, 945 had at least one chronic medical condition before the pandemic.
The team found that, among people with pre-existing conditions, average sleepers (those who regularly slept for six to nine hours per night) had a 1.8-fold higher risk of developing long COVID; while habitual short sleepers (those who regularly slept for less than six hours per night) had a 3-fold higher risk compared to healthy average sleepers.
Interestingly, despite having similar pre-existing conditions, habitual long sleepers (those who regularly slept for more than nine hours per night) did not have an increased risk of long COVID.
"Our findings suggest that not getting enough sleep may increase susceptibility to long COVID among people with pre-existing health conditions," explains Dr. Linor Berezin, an anesthesiology resident at the University of Toronto and the first author of the study. “This could be due to the detrimental effects of sleep loss on immune responses, such as impaired immunity against pathogens and increased release of inflammatory molecules.”
“Although the proportions of people with pre-existing conditions were generally similar among short, average and long sleepers, we saw that heart conditions were most common among short sleepers,” cautions Dr. Berezin. More research is needed to determine whether the higher prevalence of this condition among short sleepers underpins the team’s observations.
Nonetheless, these findings have important implications for preventing long COVID. "Insufficient sleep is a risk factor that we can change,” says Dr. Chung. “Encouraging at-risk individuals to regularly get a sufficient amount—ideally seven to nine hours— of nighttime sleep is an easy, cost-effective approach to reducing the prevalence of long COVID."
This work was supported by the Ontario Ministry of Health Innovation, the ResMed Foundation, the Wellcome Trust, the National Institute for Health and Care Research, and UHN Foundation.
Berezin L, Waseem R, Merikanto I, Benedict C, Holzinger B, De Gennaro L, Wing YK, Bjorvatn B, Korman M, Morin CM, Espie C, Landtblom AM, Penzel T, Matsui K, Hrubos-Strøm H, Mota-Rolim S, Nadorff MR, Plazzi G, Reis C, Chan RNY, Cunha AS, Yordanova J, Bjelajac AK, Inoue Y, Dauvilliers Y, Partinen M, Chung F. Habitual short sleepers with pre-existing medical conditions are at higher risk of Long COVID. J Clin Sleep Med. 2023 Oct 3. doi: 10.5664/jcsm.10818
Researchers at the Schroeder Arthritis Institute have compiled a comprehensive overview of people living with knee and hip osteoarthritis (OA), aiming to create a valuable resource for global research and clinical progress.
OA, the most prevalent form of arthritis, arises as joint cartilage deteriorates. There is currently no cure or treatment that can slow disease progression. Available interventions include medications and, in severe cases, surgery to alleviate symptoms, such as pain and inflammation.
“The key with treating OA is intervening early, and helping patients manage their symptoms before they become debilitating,” says Dr. Michael Zywiel, a Clinician Investigator at the Schroeder Arthritis Institute and senior author of the study. “Although education and exercise are important parts of non-surgical care of knee and hip OA, access to structured and evidence-based care has been a challenge, negatively impacting patient care and outcomes.”
Addressing this gap, the University of Southern Denmark introduced the Good Life with osteoArthritis in Denmark (GLA:D®) program in 2013, a treatment program that combines exercise and education.
The GLA:D® program is targeted to people with mild to severe hip and/or knee OA and is a safe, cost-effective approach to improving pain, walking function and quality of life. Based on the program’s success in Denmark, it has been implemented by several other countries, including Austria, China, Switzerland and Canada.
With the help of researchers from the Schroeder Arthritis Institute, the GLA:D® Canada program was launched in 2017 by Bone and Joint Canada. GLA:D® Canada closely mirrors the Denmark program, including the development of a patient outcomes registry.
“Now that GLA:D® Canada has operated for over five years, we are in a good position to use this program and its outcomes to guide future OA research,” says Dr. Zywiel, who is also a Primary Investigator for the GLA:D® Canada Registry. “However, an important first step is to provide the OA research community with a comprehensive description of the participants who pursue education and exercise-based treatment of hip and knee OA in Canada.”
To analyze this data, Dr. Zywiel’s team summarized the sociodemographics (e.g., age and body mass index), clinical profiles (e.g., medical conditions and physical activity levels) and health status (e.g., pain intensity and joint function) of approximately 10,000 participants with hip and knee OA. The team collected this information through surveys that participants completed before starting and during the GLA:D® program.
“We identified several common characteristics of people who participate in the program, which will be useful for researchers when designing studies and recruiting patients,” says Dr. James Young, a Postdoctoral Researcher in Integrated Arthritis Care working with Dr. Zywiel, and the lead author of the study.
Their findings revealed that participants were predominantly female, averaging 66 years old and overweight or obese. Of these, two-thirds relied on pain medications and one-third considered joint surgery. Participants reported an average pain intensity of 5 out of 10 and activity levels averaged four days per week.
“Our results indicate that people who participate in the GLA:D® program in Canada are similar to those in Denmark and Australia,” explains Dr. Young, who is also on the leadership team for the GLA:D® International Network. “This similarity opens avenues for bridging international datasets and comparing data from multiple GLA:D® registries.”
These approaches will be important for studying program outcomes in a real-world setting, such as the effects of the program on health status, non-surgical outcomes and the need for joint replacement surgery, as well as barriers to therapy uptake.
“The Schroeder Arthritis Institute has been instrumental in implementing the GLA:D® program in Canada and we are excited for the potential to use the GLA:D® registry to tackle big questions in the field,” concludes Dr. Zywiel.
This work was supported by UHN Foundation. Dr. Michael Zywiel is an Assistant Professor of Surgery at the University of Toronto.
Dr. Michael Zywiel has been a paid consultant to Smith and Nephew, DePuy Synthes, Johnson & Johnson, ZimmerBiomet and OPEXC Inc. Co-author Dr. Christian Veilette has served as a paid consultant, board member or received research support from Zimmer Biomet, CODMAN Group, DePuy Synthes, Orthogate, Orthopaedic Web Links, OrthopaedicsOne, and Smith and Nephew. Co-author Dr. Rhona McGlasson is the National Director of GLA:D® Canada and Executive Director of Bone and Joint Canada.
Young JJ, Perruccio AV, Veillette CJH, McGlasson RA, Zywiel MG. The GLA:D® Canada program for knee and hip osteoarthritis: A comprehensive profile of program participants from 2017 to 2022. PLoS One. 2023 Aug 3. doi: 10.1371/journal.pone.0289645.
Common symptoms of knee and hip OA include pain while walking, joint stiffness and reduced flexibility.
Born into a household where his parents were two generations older than him, Dr. Shabbir Alibhai has always felt that there was a special calling for him to work with older adults. It was hard for him to realize that there is a systematic bias, caused by ageism, that hinders the elders from receiving the proper healthcare they need.
The first sign was when Shabbir was deciding on his specialty in medical school. He realized that despite its great need, geriatrics—a medical specialty centered on caring for older adults—was not a popular choice among medical students.
“Geriatrics has been an overlooked area and getting people into geriatric medicine is tough. We still have unfilled residency positions every year across Canada,” says Shabbir.
Over his career, he has encountered many individuals that undervalue geriatrics. “Some would ask, ‘Why would you want to just work with old people all day? It’s not exciting’, ” describes Shabbir.
“We have to acknowledge that there is ageism in all of us.”
Shabbir completed graduate studies following his residency to address specific challenges within geriatric care. He initially looked at complex issues such as undertreatment and polypharmacy in caring for older adults.
“Older adults are not getting optimal therapy even if they are eligible for it. There is therapeutic nihilism, which is the idea that older adults are not going to live as long, so they're not going to benefit,” says Shabbir. “There is also a fear that we're likely to do more harm than good, which results in the undertreatment of older adults.”
Polypharmacy is when older adults have multiple illnesses, they can be put on multiple medications prescribed by different specialists. “At the end of the day, they can end up with 5 to 7 conditions, 6 to 10 drugs or more, and all these drugs can potentially interact with each other. But no one steps back and looks at the complexity of all of this, so it falls on the geriatricians and there are very few of us in Canada.”
Shabbir was passionate about studying these problems, but due to the large scope of the issue, he needed to find a more feasible project considering the time and money available. Supervised by Dr. Murray Krahn, who studies decision science in people with prostate cancer, and Dr. Gary Naglie, who studied patient quality of life in geriatric care, Shabbir focused on understanding how different treatment decisions can impact the quality of life for older adults with prostate cancer.
“We built a decision-analytic model to predict the best treatment option for a given patient, by incorporating the probability of dying from prostate cancer, the risk of side effects from a given treatment, the benefits of that treatment and patient preferences. And we compared that to their actual treatment to understand where the discrepancies and potential age bias were,” says Shabbir.
“It was an amazing journey and it cemented in my mind the need to study systematically aging and cancer. And that is what I have been doing ever since.”
“For many older adults, cancer control and overall survival are important, but they also want to preserve quality of life. They want to minimize side effects, and maintain function and independence,” explains Shabbir.
One of the areas Shabbir focuses on now is to improve the quality of life and reduce the side effects of advanced therapies for aggressive prostate cancer patients. He is currently conducting a clinical trial (NCT05582772) that randomizes men with advanced prostate cancer to either a geriatric assessment and management by a geriatric oncology specialist, or remote symptom monitoring with a nurse providing weekly advice and support to manage symptoms.
In the geriatric assessment and management treatment group, there are eight domains health practitioners look at that affect older adults’ quality of life (shown below). Meanwhile, in the remote symptom monitoring group, the focus is on managing symptoms rather than proactive assessment.
Eight domains of geriatric assessment and management.
Both interventions aim to reduce toxicity and improve quality of life but work in two different ways. Previous work has shown that they are effective in chemotherapy settings for multiple types of cancer. Shabbir is extending his research to non-chemo drugs with a focus on prostate cancer.
“Currently both interventions are pilot projects. Most of these patients are not referred to a geriatric oncology clinic to get a geriatric assessment, and there is no clinical program in remote symptom monitoring,” says Shabbir. “The study aims to assess the effectiveness and explore the possibility of providing these interventions to patients in the clinic.”
Shabbir has been instrumental in the establishment and operation of the Older Adults with Cancer Clinic, which has seen over 1,500 patients in the last eight years. Funded by The Princess Margaret Cancer Foundation, the clinic has witnessed a reduction in the overtreatment and undertreatment of patients with chemotherapy, surgery and radiation receiving geriatric assessment.
“We have been collecting information on various patients that we see in the clinic to understand different elements of what we do. What are we doing that’s working? How are we impacting treatment? And what is the economic significance of that?” From studies and an economic analysis published by Shabbir’s group, they found that geriatric assessment and management not only avoids overtreatment for patients, but also reduces costs for the healthcare system.
A key aspect to address in the clinic is the accessibility of the geriatric assessment. Despite its success, Shabbir acknowledges that the clinic only serves 10 to 20% of older adults with cancer at the Princess Margaret. And there are only a handful of such clinics across Canada. To address this, he is involved in the development of an app called Comprehensive Assessment for My Plan or CHAMP. The app aims to provide a mini geriatric assessment and offer basic recommendations, thereby extending the reach of geriatric care to more patients.
CHAMP’s rollout involves a field validation study to test its feasibility and usefulness, which is to find out whether patients and clinicians find the app satisfactory and whether its recommendations are useful. Funded by the Princess Margaret Cancer Foundation, the study is currently underway and Shabbir is also beginning to measure its impact.
“There are only three geriatric oncology clinics that are operating in all of Ontario and less than ten in all of Canada. Our clinic at the Princess Margaret Cancer Centre is the largest one,” says Shabbir. “We are still hopelessly unable to look after all the older adults with or without cancer because our society is aging, and we have a big gap.”
The gap lies in the ageism in our society, and it calls for a shift in perspective.
“We should be proud of our older adults,” he says. “These are our parents and grandparents, who we should look up to and value them for their contributions and wisdom. They are an integral part of who we are as a society.”
Looking ahead, Shabbir envisions a future where geriatric oncology is given the resources it needs to thrive. “I hope for more clinical staff, researchers, and training opportunities to better serve older adults,” says Shabbir. “It’s difficult at times to see people grappling with diseases and dying. But I’m incredibly humbled by the courage of older people and their resilience upon hardships.”
Meet PMResearch is a monthly column that features Princess Margaret researchers. It showcases the research of world-class scientists, as well as their passions and interests in career and life—from hobbies and avocations to career trajectories and life philosophies. The researchers that we select are relevant to advocacy/awareness initiatives or have recently received awards or published papers. We are also showcasing the diversity of our staff in keeping with UHN themes and priorities.
I am a bioinformatics Postdoctoral Researcher in Dr. Daniel De Carvalho’s lab at the Princess Margaret Cancer Centre. My work focuses on using computational techniques and algorithms to analyze biological data and answer clinically meaningful questions in the context of cancer.
I joined UHN in January 2019 when a friend connected me with Dr. De Carvalho. When I met with him, I thought he was brilliant, and his work aligned exactly with what I wanted to do. I remember walking into the MaRS Discovery District and realizing this is where I wanted to be. Everywhere I looked, everyone was so dedicated to improving people’s lives and it was so exciting to be in that atmosphere. From that day, I had my heart set on joining UHN.
What I want to do with my career in the long term is to help transform healthcare into something that is more just and compassionate. I have psychiatric and neurodevelopmental disabilities that were only diagnosed in the last few years. For a long time, I struggled on my own without medical support, but I believe I have been incredibly lucky throughout my healthcare journey. Now that I am on the other side, I want to help those who are not as fortunate.
A lot of my time is spent on sex and gender equity advocacy. Transforming healthcare and advancing research is all about health equity and taking an intersectional approach. I apply this to my research by adding a sex and gender lens into the biological work that I am doing and encouraging my colleagues and friends to do the same.
I also spend time working on postdoc advocacy. I am surrounded by brilliant people doing work that they truly believe is going to change people’s lives and I think it’s important to understand their experiences and the challenges and barriers that they face.
The longer I am at UHN, the more people I have met who are sincerely dedicated to the shared vision of a more just and compassionate healthcare system. There are a lot of people at UHN who desire to meaningfully improve quality of life through healthcare, research and education.
Outside of work I am a butler to a three-year-old Corgi name Sophie. She is a master of trial and error and a substantially better scientist than me. She studies me so she can adapt her behaviour to get what she wants based on previous observational data gathering. I don’t train her, she trains me.
I had a lovely moment a couple of months back while I was walking my Corgi with my neighbour. We passed by a progress pride flag that now includes the intersex flag, and he asked me what that meant. It was a lovely moment where I could use science communication in my everyday life and tell him what it meant as a member of the 2SLGBTQIA+ community but also from the perspective of a biologist.
Pride in STEM means I can use my intersecting identities, that have shaped who I am today, to make me a better scientist. It allows me to find the junction between my health care experience and my human experience as a queer person. It gives me, and other queer STEM folk at UHN, an opportunity to bring a little more authenticity with us when we come to work.
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