Research Impact – Feature Stories
Managing pain for children living with sickle cell disease
Professor Jennifer Stinson has built a renowned program of research aimed at improving chronic pain management in children. One of her most recent projects, includes the development of a mobile app called iCanCope, which is designed to help children and youth living with sickle cell disease (SCD) manage their chronic pain. What motivates her she says, is the opportunity to not only improve a child’s quality of life, providing them with tools to help them manage their pain as they grow into young adults, but also address the health inequity and barriers to access they face when it comes to pain management.
“Unfortunately, people living with SCD are known to experience many health care inequities, particularly related to pain management,” says Stinson.
Sickle cell disease (SCD) is the most common inherited blood disorder globally and affects mostly people of African descent. Pain is the most frequent and distressing symptom and is associated with disability, psychosocial distress, repeated hospitalizations, and risk of organ damage. A hallmark of SCD includes the occurrence of acute vaso-occlusive episodes. This is when sickled red blood cells become blocked in veins and arteries, causing intense pain and trouble breathing. Stinson notes
that because individuals are born with this disease, they often develop chronic pain over time.
“We know we cannot cure or alleviate the pain, but we can empower young people to live well with pain, and to manage it with resources and strategies that are effective, building their confidence in leading a fulfilling life,” says Stinson who also holds the Mary Jo Haddad Nursing Chair in Child Health, and is a Senior Scientist in the Child Health Evaluative Sciences Research Institute at The Hospital for Sick Children (SickKids).
iCanCope includes four key features, which allow users to track their symptoms, set structured goals to improve their daily function, access a curated library of evidence-based resources, and participate in a community discussion platform, where they can connect with other young people who live with SCD.
The app also uses an algorithm to push strategies and resources to a youth user if they
indicate they are having trouble with an issue related to their pain, or if they
are looking to set a goal to improve their wellbeing, such as improving sleep.
This project has earned Stinson the prestigious 2023 Barer-Flood Prize in Health Services Research from the Canadian Institutes of Health Research (CIHR), providing Stinson and her team with funding to continue to pilot the app across clinics in Canada.
“The app is really intended to be an adjunct to the care that young people with SCD receive in hospital,” says Stinson, “and through our research and rigorous evaluation, we want to ensure that health care providers feel confident prescribing our digital app to their patients.”
Stinson notes that a previous qualitative study on factors influencing engagement in SCD research, found that “patients with SCD are particularly prone to suffer unequal treatment, and to experience health care injustice (i.e., perception as drug seekers).”
Tattiana Flowers, a young woman living with SCD and a patient partner on Stinson’s project, knows that feeling of mistrust all too well, and has experienced this inequitable response firsthand. As a young SCD patient, during one of her many ER visits to manage her pain, Flowers overheard health care providers dismiss her pain saying things like “they are [sicklers], they are just here for drugs.”
“I think there is a misperception in society that sickle cell disease is only a Black disease, or that the pain is not that bad, and I wanted to be a part of ensuring there was a better way forward for younger patients who have to live with this disease,” says Flowers who recently graduated from Humber College with a bachelor’s degree in health sciences.
Her experience living with SCD led her to become a patient partner with Stinson and her team at SickKids where they intentionally focused on co-designing iCanCope in collaboration with young SCD patients and clinicians, helping to ensure that it addresses the needs of this vulnerable population.
“The three main messages we heard in some of our initial consultations was that the
app needed to be simple, provide a safe place for community engagement and discussion, and focus on living life, not just on pain,” says Stinson.
Flowers, who has trialed the app as part of the project, shares that many of iCanCope’s key features would have been very beneficial to her as a young patient with SCD.
“Having an opportunity to conduct a pain check and understand your pain level, where it hurts and if the pain has gotten worse or better over a week, is something very useful for a young person who is trying to understand and manage their pain and daily function,” says Flowers.
iCanCope’s resource library, which allows users to not only find education about their pain, but also access youth-friendly materials that address mental health, anxiety, and topics related to their transition to adult care, is something Flowers also worked to improve.
Flowers adds she was able to voice her suggestions regarding this feature, asking that the researchers cycle through many different articles, resources and activities in the app, to keep users engaged.
“So many SCD patients like myself are hungry for information, and these
resources are so useful,” says Flowers. “I’ve really enjoyed using the app, if I was younger, this would definitely have been something I would have used, and is different to the coping mechanisms I developed.”
The app has been rigorously evaluated in a randomized control led trial involving 111 youth who lived with SCD pain. After six months, youth who received the iCanCope intervention reported 37 per cent fewer days with pain than those who received education alone.
The iCanCope program was also associated with a reduction in average daily pain intensity from baseline to 6-month follow-up. Qualitative data revealed that most youth would continue to use the program (92 per cent) and would recommend it to others (83 per cent).
Young people who used iCanCope also highlighted the value of the program, a quote from one study participant stated, “If I didn’t have a good day I would mark it down, and it would encourage me to try harder to have positive energy. If I didn’t have a good sleep the night before, I would put in a [score of] two (very bad), then I would be encouraged to go to sleep earlier…or try to persevere through the day, so I can put in a
better score. And it would just make me feel better.” (female, age 13).
“As a nurse practitioner in a chronic pain clinic, if I were to prescribe a digital health app, I would want to ensure that it was evidence-based, that it was co-designed and that it has been shown to improve outcomes,” says Stinson.
With new funding from the Canadian Institutes for Health Research, iCanCope will be rolled out across 8 SCD clinics across Canada as part of a national implementation project. This new study aims to identify the local facilitators and barriers to integrating iCanCope to each clinic. Lessons learned will then be synthesized into a roadmap to guide other researchers and clinicians in building and integrating digital health
interventions for youth with SCD.
Driving health policy change to eliminate TB in Canada
Genevieve Armstrong, a former public health nurse and current Bloomberg Nursing doctoral student, is examining Tuberculosis (TB) care policies across Canada in the hopes of one day eliminating the disease in its entirety. Her research looks closely at three provinces with the highest percentages of TB disease (Ontario, Quebec, and British Columbia), and her results show troubling health policy issues that create
substantial and inequitable barriers for people who require urgent access to TB care.
A large proportion of these individuals are migrants, refugees, and people without
immigration status, a vulnerable sector of the population that is at risk of being overlooked. According to data from the Public Health Agency of Canada, in 2022, migrants represented 74.5 per cent of all diagnoses of active TB cases in Canada. The Canadian government is a signatory of the United Nations Political Declaration on the fight against TB, and has publicly committed to eliminating the disease by 2030. However, Armstrong’s research shows that this goal is at risk of not being reached.
“The policies currently in place to manage TB in Canada are inequitable, and they are driven largely by politicians with little knowledge or expertise of the disease and its progression. Without any policy change, Canada will not eliminate TB by 2030,” says Armstrong.
TB is a bacterial infection that spreads through the air when someone coughs, sneezes, or sings, though it requires prolonged contact with an infected individual and is not considered as contagious as COVID19 or the flu. TB was considered endemic in Canada until antibiotics were developed in the 1940’s. Though it is treatable and curable, the disease has remained entrenched in Indigenous communities, and among those who live and work in tight and enclosed spaces, such as among migrant workers, and among immigrant families who may share living quarters.
Armstrong conducted a critical qualitative study assessing the development and operationalization of TB policies and practices in Ontario, Quebec and BC. Following interviews with eight policy makers (e.g. provincial medical officers of health and policy consultants), and 15 policy implementers (e.g. TB clinicians and public health providers), Armstrong has found that the lack of formalized TB care policies
creates not only inequitable implementation across the country, but also leads to significant challenges for those who require TB care access.
Generally, undocumented migrants and foreign visitors are not eligible for health care under any of the provincial health insurance plans (GOBC, 2021; GOQ, 2020; OMOHLTC, 2021. Of the three provinces Armstrong has assessed, only Ontario has a formal TB policy (TB-UP program) that is inclusive of uninsured individuals.
While TB medications are free across all three provinces examined in the study, (GOBC, 2021;GOQ, 2021; OMOHLTC, 2018), Armstrong notes that free medication and Ontario’s TB-UP Program do not suffice in ensuring quality TB care for migrants with a precarious immigration status.
“To achieve equity in TB care, political parties and policy makers should engage with implementers and migrants on policy development and the implementation process,” says Armstrong.
Issues related to TB policies, include the requirement in all three provinces that newcomers to Canada must abide by a three-month waiting period before they can access insured health care services, though Quebec does make an exception to this rule for infectious disease treatment.
However, health care providers interviewed as part of Armstrong’s study, have shared that there are considerable gaps that make providing care to individuals with TB difficult.
“In Quebec for example, nurses have shared that by the time they connect with the province about an uninsured TB patient, that person has either completed isolation or developed more advanced symptoms, requiring them to be hospitalized,” says Armstrong.
Similar challenges abound in Ontario, where although the TB-UP policy on care provision exists, it does not cover hospitalizations, initial primary care consultations, and home care services.
“These financial barriers may prevent migrants from accessing care, leading to both individual and public health implications,” adds Armstrong.
In British Columbia, Armstrong has found that although the province does not have a
formal TB policy in place, their care services are delivered in a more centralized way, with many physicians on salary as opposed to a fee per service model, positively influencing their ability to provide care to uninsured migrants.
She further notes that many of the health care providers she has interviewed advocate for eliminating the three-month waiting period as a policy intervention, so that care can be provided without a delay in treatment.
“What many people seem to forget is that TB is a contagious disease. When we allow people to suffer and remain contagious, it creates a twofold burden, both on our health systems and in society at large, where TB infection can continue to spread,” says Armstrong.
Before COVID19, Armstrong says, TB was the leading cause of death in Canada surpassing even HIV. TB can spread to other organs, and advanced symptoms of the disease often result in individuals requiring hospitalization, causing them to lose their jobs and their hard earned immigration status. There is also the risk of exposing other members of the public to the disease.
Armstrong believes that the lack of investment in policy change stems from the stigma
surrounding TB as an infectious disease. It has long been considered a disease of the poor, further cementing preexisting health inequities in society, especially among today’s migrant workers, immigrant populations, and refugees.
“Inequity in health policy spreads like disease, it leeches all of us, inhibiting our ability to achieve our full potential as citizens,” says Denise Gastaldo, Amstrong’s PhD supervisor, and an associate professor at the Lawrence Bloomberg Faculty of Nursing whose research focuses on the political and social dimensions of health.
“Genevieve’s research is providing an important perspective on the interconnectedness of society and the need for us to address infectious disease policies that have the potential to impact everyone,” says Gastaldo.
For Amstrong her research is key to raising awareness about the ongoing issue of TB in
Canada and to what she hopes will be the creation of new policies that remove barriers
to care.
“It is possible to eradicate TB,” says Armstrong, “but we must be inclusive in our health
care policies, or we are never going to achieve that aim.”
Hypertensive disorders of pregnancy among Black Canadian
The impact of race and ethnicity on women’s cardiovascular health is at the heart of Deborah Baiden’s doctoral research examining hypertensive disorders of pregnancy among Black Canadian women.
In a recent scoping review published in the Canadian Journal of Cardiology, Baiden examined literature that identified several contributing factors to a woman’s risk of hypertension in pregnancy.
These include their socio-economic status, income and education level, as well as barriers to accessing health care services particularly for refugees and those
without immigration status. Baiden, who is also a trainee member of the Canadian
Women’s Heart Health Alliance, has found throughout her research, studies indicating Black women in the US are five times more likely to die of hypertensive disorders
of pregnancy, while in the UK, that number stands at around four times more likely, compared to non-Black pregnant women. This information is important Baiden says, because it demonstrates the need for better understanding of the risk profile of Black Canadian women, and subsequently any changes to their prenatal or postnatal care provision to ensure they have equitable access.
“It is my personal belief that no one should be at risk of losing their life while bringing another life into this world,” says Baiden. “This finding solidified for me why
this work is important, because we don’t have this data on Black Canadian women, and yet we know from evidence in other countries that they are at a higher risk of
complications and hypertensive disorders of pregnancy.”
Hypertensive disorders of pregnancy encompass a variety of conditions, including gestational hypertension which can occur after 20 weeks of pregnancy. It can also
include preeclampsia, a condition in which the pregnant person’s blood pressure remains dangerously high, amplifying stress on the heart muscle and affecting the central nervous system which can result in seizures. It can also lead to pre-term birth or stillbirth.
Most of the time, hypertension in pregnancy resolves once the individual has given birth, but there is emerging research showing that women who experience hypertension in pregnancy can experience lasting negative effects on their heart health.
“Many newcomers to Canada experience a deterioration in their health status,” says Baiden. “Passing the medical examination as part of the immigration process might
mean new Canadians are in good health when they arrive, but barriers to improving
their socio-economic status including obtaining licenses to pursue their professions, can have a significant and negative impact on their health status in the years that follow.”
Baiden also points to the role that gender and discrimination can play in relation to risk factors for developing hypertension in pregnancy, and how the culmination of factors around race, and socioeconomic status can leave women feeling that their concerns
are brushed aside by health care providers and inhibit their ability to seek out and access prenatal and postnatal care and support when they need it.
With the support of her supervisor Professor Monica Parry, a renowned researcher in women’s cardiovascular health, Baiden is conducting a mixed-methods study recruiting women who are over 18 years of age and of African descent from across Canada, who have had a history of hypertension in pregnancy within the last ten
years. She is also working with a patient partner, a woman of African descent with lived experience of hypertension in pregnancy, to ensure her research is co-designed with what matters to patients in mind.
“I’m looking forward to seeing what this study will reveal about the prevalence of hypertensive disorders of pregnancy among Black Canadians, but also how it will drive further research on this topic and inform culturally safe care practices that align with a
long-term and rigorous strategy around cardiovascular health in women,” says Baiden.
Baiden believes that some of these strategies should take a preventative approach and include community engagement campaigns with knowledge provided in a culturally specific way to raise awareness of cardiovascular disease and pregnancy related hypertension among Black Canadian women.
“Knowledge is power. When someone doesn’t have knowledge about a certain disease or prevention strategies, it is always dangerous,” says Baiden. “Making sure that knowledge is readily available and accessible in a way that populations understand and that is safe for them is key.”
In 2023, Baiden received a Personnel Award for Black Scholars from the Heart and Stroke Foundation and Canadian Institutes for Health Research (CIHR). She is grateful for this recognition of her research and hopes that it will aid her in continuing to raise more awareness about pregnancy related cardiovascular diseases.
One of her most important goals she says, is to use her research to create pathways that inform policy about how pregnancy care should be administered, especially among Black Canadians.
A health promotion video series for Indigenous men, aimed at diabetes prevention
Amy Wright’s program of research actively engages with Indigenous communities to promote culturally safe and holistic care for Indigenous Peoples. Her research is a means of improving not only their health outcomes, but also equitable access to care services.
As part of a Social Sciences and Humanities Research Council (SSHRC) funded study, Wright who is an assistant professor at the Lawrence Bloomberg Faculty of Nursing, is working with the Indigenous Diabetes Health Circle (IDHC), an Ontario-based organization that is focused on providing diabetes education and prevention programming, and volunteers from the Indigenous community, to create a digital health promotion campaign using a video series specifically for Indigenous men and youth, that provides culturally relevant ways to engage in healthy living.
The goal Wright says, is to make health resources for men visible and focus on solving health challenges in their communities by embracing a strength’s-based approach.
“Rather than measuring deficits, we are actively creating resources by Indigenous Peoples for Indigenous Peoples, that seeks to reflect and respond to the needs of the community and to provide them with the care resources they need,” says Wright.
Featuring perspectives from Indigenous Elders and fathers, the video campaign will share how many of these men have worked to establish a healthy lifestyle that includes healing from trauma related to colonization, generational trauma, and learning to build a better relationship with the land.
“What we have heard time and again in our preliminary interviews, is that in our programming and training there is a lack of male faces among our participants, but that is not representative of their involvement in their own health or in their families,” says Jessica Pace, Knowledge Program Manager at the Indigenous Diabetes Health Circle
and partner on this research project. “We also know balance and support in family circles benefits everyone, and we wanted to highlight the stories we were hearing of men who are taking a very active role as partners and as fathers, and make sure that was reaching men who might not be seeing that.”
According to statistics from Diabetes Canada, in 2022, the prevalence of both type 1 and type 2 diabetes was at 17.2 per cent among First Nations living on reserve, and 12.7 per cent among those living off-reserve. Literature attributed to Janice Longboat, an Elder of the Turtle clan of the Mohawk Nation, describes the impact of forced relocations that moved many Indigenous Peoples away from traditional land-based foods, and made them reliant on ration boxes containing flour, salt, sugar and lard.
Pace adds that Indigenous Peoples are diagnosed with diabetes at a younger age and often have more severe symptoms when first diagnosed, making prevention and management of the disease a priority for Indigenous communities and health
organizations like the IDHC. One of the main barriers to care for Indigenous people
is a lack of culturally appropriate care.
In addition to visibility, Wright and Pace are focused on ensuring the video series offers a holistic approach, placing considerable emphasis on spiritual health, and the role of men in their families.
“There is a need for health resources that better reflect Indigenous Peoples holistic
viewpoint, cultures, and traditions,” says Wright.
This holistic approach Pace adds resonates with Indigenous Peoples, because it allows the incorporation of Indigenous worldviews and wisdom, and demonstrates the connection between the mind, body and spirit.
“The holistic approach in Indigenous health practice sees the person as part of a community and culture, and a part of their environment. It empowers people to find health and healing outside of the health care system where they may face racism and
barriers to access, which is part of the goal of this series,” says Pace.
Brady Lacroix is one of the project participants, and describes himself as a dedicated supporter of health and wellness throughout Indigenous communities and across Turtle Island. He is a certified holistic recreation coach working in Indigenous communities where he speaks to men and youth about living a balanced and active lifestyle.
He draws inspiration he says from witnessing his father’s journey with melanoma and prostate cancer and the courageous way he saw his father handle those diagnoses including his ability to adjust his lifestyle.
“Conversations around men’s health are not always happening. It took me seeing my own father’s journey, to realize that we need to be talking to men about their health, their preservation, living a long life, and these are some of the conversations I have been seeking to have as a coach,” says Lacroix.
He chose to participate in this project he says, because he feels strongly that any opportunity to pass knowledge on to the next generation, especially as a father, is
a truly rewarding experience. Some of what he hopes to convey through this video project series are the benefits of land-based activities.
“Reaching out to the land is incredibly healing and it requires activity, which can be as simple as walking, Nordic pole hiking, or being in the water. It is a good opportunity to find balance,” says Lacroix.
Filming of the video series Wright says, was intentionally done on the land to create a sense of engagement and connection for participants about what they feel wellness looks like to them. In addition to the video series, Wright’s research project will also look to create a training module for community health workers.
“From a nursing perspective, it is important to teach community health workers what culturally safe care looks like in order to provide the most equitable care to the communities that we serve,” says Wright. “This video series and the resources that will come from it, will provide additional tools for community health workers to draw upon that also reflect the community, and will help them build trust and relationships with the Indigenous clients they serve.”
The next phase of Wright’s research will include an analysis of the video’s reception from viewers as well as individuals from the IDHC. The hope, Wright says, is that more Indigenous men will be able to act as intermediaries in their families, and in their communities, to promote healthy living.
Improving access to genetic testing for hereditary breast cancer
Exploring equitable and improved access to genetic testing for women with breast
cancer has been the foundation of Professor Kelly Metcalfe’s program of research for
the past two decades.
Her research has actively set out to understand how access to genetic testing for cancer predisposition genes, including BRCA1 and BRCA2, at the time of diagnosis, can help women navigate their cancer treatment journey, which includes making informed decisions on surgical interventions such as bilateral mastectomy or breast conservation.
What she has found in most of her studies, is that if women have access to genetic
testing at the time of cancer diagnosis, they can use that genetic information to make informed treatment decisions. However, many women across Canada do not have access to genetic testing before cancer treatment is initiated.
“Most women who receive a breast cancer diagnosis do not know if they have a genetic mutation in a cancer predisposition gene,” says Metcalfe of the need for broader access to genetic testing. “We know from previous evidence that those who do have a BRCA1 or BRCA2 mutation should receive different treatment for their cancer as it may impact their survival.”
Individuals who carry BRCA1 or BRCA2 pathogenic variants have an 80 per cent risk of developing breast cancer over the course of their lifetime. After a first diagnosis of breast cancer, they also have an elevated risk of developing a second breast cancer in the same or opposite breast. As a result, the treatment plans they are offered, take into consideration this elevated risk of new cancers.
According to Metcalfe’s research, most women who know they have a BRCA1 or BRCA2 mutation at the time of breast cancer diagnosis elect for bilateral mastectomy (removal of both breasts). Additionally, there are new medical treatments that have been shown to only be effective in women with a BRCA mutation, which further emphasizes the importance of knowing if an individual has a genetic mutation prior to initiating treatment.
“For women who are at this vulnerable point in their cancer journey providing them with best information about their genetic status will allow them to make a more informed treatment plan in consultation with their care provider,” says Metcalfe who is also the Associate Dean of Research and External Relations at Bloomberg Nursing and a Senior Scientist with Women’s College Hospital Research Institute.
Currently in Canada, women with breast cancer who meet the criteria for genetic testing are referred to a regional genetic testing centre. This often requires travel to larger urban centres, where a woman receives genetic counselling and provides a blood sample. According to Metcalfe, this creates a significant barrier for women who may reside in rural areas, or who have limited availability to travel especially at the time of cancer diagnosis when a woman is meeting with numerous cancer specialists.
To minimize these barriers and improve access to genetic testing, Metcalfe has been evaluating a new model of care for women who are diagnosed with breast cancer, called Direct Rapid Genetic Testing or DRGT.
Unlike other models of genetic testing, DRGT allows individuals from across Canada to test themselves using a saliva kit, they spit into a tube and then mail in their specimen to the genetic testing laboratory. Genetic test results, Metcalfe says, are received within one week.
“What makes this process more accessible is that women can conduct this test from the comfort of their homes and without having to first speak with a genetic counsellor or visit a blood collection lab. Instead, they are provided with access to virtual information videos and mail in a saliva sample,” says Metcalfe. “We are in essence, revolutionizing the way we provide genetic testing to these women.”
Previous studies led by Metcalfe have shown that of the BRCA-positive patients, 95.7 per cent reported that they used their genetic test result to decide whether to elect to have a bilateral mastectomy. An additional study conducted by Metcalfe also showed that women who opted for this procedure did not experience any negative psychosocial outcomes.
“The majority of women want to know and understand their risk,” says Metcalfe. “If it were up to me, every woman would have access to this testing right now.”
Metcalfe and her team have recently finalized recruitment for this study. Over 1000 women from across Canada received genetic testing at the time of breast cancer diagnosis using this novel Direct Rapid Genetic Testing model of care. Many of these women would not normally have been able to access genetic testing at the time of cancer diagnosis.
Metcalfe and her team are now analyzing the study results, and will be evaluating patient and clinician satisfaction with this new model, in addition to looking at cancer treatment decisions in relation to genetic test results.