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Episode Description:
Navigating an arthritis diagnosis can be confusing, emotional and overwhelming. There’s a lot of information to absorb as patients face treatment decisions and major life changes.
The Canadian healthcare system has guidelines that outline best practices for each health condition. But this doesn’t mean all patients with the same disease receive the same treatment. Patients and physicians discuss options and make decisions together. That’s The Care Equation: You + Your Doctor. The goal: to provide the highest quality care possible. This means reducing pain, swelling, risk of joint deformities and improving function. It means giving people their lives back.
But how do we ensure all arthritis patients receive high quality care? How do we get every patient diagnosed early? How do we make sure their care is safe, efficient and what they want? That’s where arthritis researchers come in.
Episode Content:
In this episode, we take you behind the scenes to give you a look into how health decisions are made and how researchers are working to improve care for people with arthritis.
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Content and Topic of Research
Arthritis Research Canada strives to accelerate discoveries aimed at preventing arthritis, facilitating early diagnosis, providing new and better treatments and improving quality of life. Our research scientists are working tirelessly behind the scenes to evaluate the care that arthritis patients receive.
They are studying access to rheumatologists, side effects of different treatments and medications, safety and efficacy of COVID-19 vaccines, mental health support, pregnancy and biologics and much more. If you have a question about arthritis, we have research to address it. Think of arthritis research as a healthcare report card that identifies what is working and what could be done better for arthritis patients.
Click the below menu to learn more about how we are addressing quality of care through research.
Research Scientist, Arthritis Research Canada
Dr. Claire Barber is an Assistant Professor in the Division of Rheumatology, Department of Medicine at the University of Calgary’s Cumming School of Medicine. She is also a research scientist at Arthritis Research Canada and a practicing rheumatologist.
For her PhD thesis, Dr. Barber developed the first set of quality indicators for cardiovascular care for rheumatoid arthritis. She has also developed nationally recognized expertise in quality measure development and has worked extensively with the Arthritis Alliance of Canada to develop a framework for evaluating models of care for inflammatory arthritis.
Research Scientist, Arthritis Research Canada
Dr. Glen Hazlewood is an Assistant Professor in the Division of Rheumatology, Department of Medicine at the University of Calgary’s Cumming School of Medicine. He is also a research scientist at Arthritis Research Canada and a practicing rheumatologist.
Dr. Hazlewood’s research focus is on understanding how to align treatment choices in rheumatoid arthritis with best evidence and patient preferences. His research is guided by a belief that patients should have a central role in which treatments they take and which treatments physicians recommend for them. He chairs the Guidelines Committee through the Canadian Rheumatology Association and is leading the development of Canadian Guidelines for rheumatoid arthritis. With these guidelines, he is taking a novel approach to incorporating patient preferences – a first internationally.
Scientific Director, Arthritis Research Canada
Dr. Diane Lacaille is the Mary Pack Chair in Rheumatology Research and a professor in the Division of Rheumatology at the University of British Columbia. She is also the Scientific Director of Arthritis Research Canada and a practicing rheumatologist.
Dr. Lacaille’s research focuses on two areas: 1) Studying the impact of arthritis on employment and preventing work disability. To that effect, she has developed Making it WorkTM, an online program helping people with arthritis deal with employment issues. 2) Evaluating the quality of health care services received by people with rheumatoid arthritis.
Her research has been supported by peer reviewed grants from the Canadian Institutes of Health Research, the Canadian Arthritis Network, The Arthritis Society of Canada and the Canadian Rheumatology Association. In 2019, she was awarded the Canadian Rheumatology Association’s Distinguished Investigator Award. She also received the Queen Elizabeth II Diamond Jubilee medal in 2013 for her research contributions.
From initial pain to diagnosis and treatment, how do we ensure all arthritis patients receive timely, high quality care? Below are some frequently asked questions about quality of care and guidelines, related research articles, videos, and general information to explain how arthritis healthcare decisions are made and how researchers are continually evaluating quality of care to improve the lives of over 6 million Canadians with arthritis. We hope that building public awareness about this important topic will encourage people to play an active role in their arthritis treatment.
Several things go into high quality care. The first is safety. We want our care to be safe and we don’t want to do any harm in the care that we provide. We want care to be effective. We want to be using the best care, according to the guidelines to achieve the best outcomes for patients. We want care to be efficient. We don’t want waste in our healthcare system. We want care to be equitable. So we want to make sure that we’re providing care to patients regardless of where they live or their resources. We want to make sure that care is patient-centered so that patients are at the center of their care and their care teams – guiding decisions according to what’s best for them. And we want care to be timely so that people are getting access to care at the right time for the right reasons with the right provider.
There are a number of factors. Doctors first ensure they have the correct diagnosis. This may be established via blood tests, physical exams and hearing the patient’s story. Doctors then evaluate the evidence and best guidance and make treatment recommendations. Patient preference for treatment, as well as other health factors and stage of life are also considered. Arthritis treatment decisions are shared decisions between doctor and patient.
Yes, it’s critical that the patient’s perspective is taken into consideration when developing recommendations. Patients are the ones living with arthritis and making a recommendation is all about balancing risks and benefits of treatment. Preference sensitive recommendations, sometimes called conditional recommendations, are recommendations where there isn’t one best treatment for all patients. One treatment may be appropriate for one patient and another treatment may be more appropriate for someone else. It really comes down to the physician and patient discussing risks and benefits and choosing a treatment that works best for the individual patient. This is what shared decision-making is all about.
Arthritis care teams can include a family physician, rheumatologist, physiotherapist, occupational therapist, social worker, pharmacist, etc. Each patient is at the centre of his/her care team and should be the one directing it and deciding who needs to be on the team.
Arthritis is over 100 diseases, so finding cures is no simple task. It’s important that in the meantime, we’re also doing research that allows us to improve the quality of life for people who are living with these serious diseases until the time when there are cures.
Unfortunately, many patients across Canada may not have timely access to care. The reasons for this are varied. It may be that people aren’t aware that their symptoms require a visit to a family doctor. And in some cases, the family doctor may not have the skill set to identify symptoms as requiring urgent attention. Many regions across Canada also lack access to rheumatologists. While the country has a large number of rheumatologists, they tend to be centred in more urban areas in the south. Individuals living in northern parts of many provinces and territories may not have the same access to rheumatologists and/or rheumatology specialty care.
Physicians in Canada are licensed and, to maintain that license, are required to do maintenance and certification. This means doctors have to prove to their licensing bodies that they are staying up to date in a variety of ways. Maintenance can include self-improvement projects through evaluations, research, attending conferences, reading journal articles, guidelines and discussing difficult cases with colleagues to enhance learning. It’s a continuous process to ensure physicians are applying the best evidence in every clinical situation.
Patients should always be the centre of their care teams – communicating their needs, how they’re feeling, and the information that they need to make the best healthcare decisions for them. Patients should find healthcare providers that can listen effectively and work with them as a team.
How can we get patients access to care in a timely fashion? How can we get them the best treatments? How can we support them through their journey? How can we get the best outcomes for patients? Physician, healthcare system and patient factors all come into play when asking these types of questions.
Virtual Care
The COVID-19 pandemic has caused an exponential increase in the use of virtual care. So this area is ripe for questions about quality of care. What are the most appropriate clinical scenarios, diseases/conditions and patient questions to answer through virtual care and what really needs to be seen in person? How does the use of virtual care impact our health systems? Are we getting the best outcomes for arthritis patients using virtual care? How long can virtual care be done before a patient needs to come in and see their physician? Are there patients that are underserved through virtual care that really should be getting more in-person care? There are a lot of questions about this topic and how patients feel about it. These are just some of the key questions that help us think about this new way of providing care to arthritis patients. If we apply a quality lens to it, we can develop the most appropriate ways of using virtual care to provide the best care for patients.
Arthritis Complications
Another great example has to do with arthritis complications. People living with arthritis are at greater risk of serious complications like chronic diseases that occur as a result of ongoing inflammation. These include heart attacks, strokes, diabetes, fractures from osteoporosis (thinning of the bones) and infections, which are more common in people who have arthritis. Yet, these complications often go undetected.
Guidelines have been established, based on the best available evidence, to screen for these diseases and to address the risk factors, in routine clinical practice. However, these often get missed for a variety of reasons. Lack of time during appointments, the need to focus on more urgent matters, or not having the right information available at the right time can cause prevention care to take a lower priority. At Arthritis Research Canada, we are using technology to help family physicians screen for and address risk factors to prevent chronic diseases related to inflammation in patients with arthritis. How are we doing this? We are building automated reminders into their electronic medical records that will come up automatically during a patient’s visit.
These reminders will provide physicians with personalized information about a patient’s specific risk for complications and notify them of what needs to be done. This will help guide a discussion with the patient about measures to take to prevent diseases like heart attacks, strokes, diabetes and fractures. Ultimately, we want to see this translate into less heart attacks, strokes, diabetes, fractures, lung disease, infections, etc. in arthritis patients.
Healthcare guidelines are documents that outline best practices for a certain health condition. They can include recommendations about what treatments patients should receive, what tests should be ordered, how closely people should be followed up with and a number of other recommendations.
Guidelines help standardize practice between different physicians. This doesn’t mean all patients will receive the same treatment, but rather that the discussion that physicians have with their patients should be similar regardless of where they live in Canada. Guidelines can also be a way for physicians to stay up to date on the latest evidence. And they are a great resource for patients to learn about their health condition and the different treatments that are available to them. Ultimately, guidelines help ensure quality of care for patients.
Once a topic is judged to be important, a guideline panel is assembled. This includes physicians, researchers, patients with arthritis and other healthcare providers, physiotherapists, occupational therapists, pharmacists, etc. Guidelines are typically published by physician and healthcare societies. The Canadian Rheumatology Association publishes several guidelines on its website.
An example of guidelines would be the “CRA Recommendation on COVID-19 Vaccination in Persons with Autoimmune Rheumatic Disease.”
This depends on the guidelines that are being addressed. For example, we know that exercise is beneficial for knee and hip osteoarthritis. For other conditions, the evidence is still evolving. So those recommendations will change more frequently and will be informed by ongoing research at Arthritis Research Canada. Guidelines are usually updated when new treatments are available or new evidence about a particular condition emerges.
A living guideline is updated as soon as new evidence emerges. The typical period of time for updating a guideline is around two to three years. Living guidelines reduce this time period to several months.
Availability of treatments, costs and patient preference also play a role in treatment decisions.
Guidelines can vary from country to country. For some situations, it’s very clear that one treatment is best. And in these situations you’ll typically see international guidelines agree. In other situations, there may be different treatments that are available in one country or varying treatment practices that influence recommendations. For this reason, it’s really important that guidelines are contextualized to the country that they’re being applied to. Even within Canada, guidelines can vary by province. There may be different access to different medications or other types of treatment, and this can impact what recommendations are made.
The most important tool and resource patients have is their healthcare team, including physician, pharmacist, physiotherapist, or occupational therapist, depending on the decision. There are also tools called decision aids. These are resources that are either paper-based or online and help patients make decisions about their care that are in line with their preferences and values. Of course, decision aids should not replace the patient-physician discussion, but should be used to supplement it.
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