Over the last decade, patient-centred care (PCC) has become a focus within rheumatology and in the broader healthcare community. Patient-centred care puts patients and their families at the forefront of the care that they receive. According to the British Columbia Patient-Centred Care Framework, patient-centred care incorporates the following key components:
Shared and informed decision-making;
An enhanced experience of health care;
Improved information and understand; and,
The advancement of prevention and health promotion activities.
This approach emphasizes patient-voice, information sharing and shared decision making – ensuring there is a collaboration between the patient, their family, and their health care provider(s). There should be a balance between the health professional’s knowledge and the patient’s personal knowledge, experiences and preferences. PCC is based around team work rather than a potentially unbalanced healthcare provider-patient relationship. PCC has been shown to increase patient satisfaction, improve self-management, and ultimately lead to better health outcomes. Health authorities, patient advocate groups, and researchers throughout Canada are working to make patient centred care a priority.
There are several challenges to delivering PCC on a systemic level. It requires a significant shift to the way in which the healthcare system operates, and perhaps more importantly, a significant shift in the culture of health care. An effective way of transitioning to PCC is to ensure that the next generation of health professionals have sufficient training in the area. An effective way to achieve this is to have students learn directly from patient advocates and patient educators. In October, the Pharmacy School at the University of British Columbia (UBC) led by example by doing exactly that.
The most recent EULAR recommendations for pain management in inflammatory arthritis and osteoarthritis (OA) include physical activity and exercise as a part of a patient’s treatment plan. Physical activity has been shown to significantly ease joint pain and increase mobility, for this reason, exercise is increasingly being prescribed by physicians and other healthcare providers.
Some examples of well-known and effective exercises for people with arthritis include walking, biking and swimming. These are low-impact aerobic exercises, meaning they will generally be easier on the joints and cause your heart rate to increase. Are there other activities that could also benefit people living with arthritis, such as yoga?
Despite the lack of scientific proof, stem cell therapy is becoming increasingly popular, with dozens of clinics open across Canada and hundreds in the United States. These clinics are offering treatment for a wide range of diseases including asthma, multiple sclerosis, crohn’s, osteoarthritis and inflammatory arthritis. A recent study found that Canadian businesses are making strong and unproven claims about the benefits of stem cell therapy. Advertisements intentionally use scientific language which can mislead consumers into thinking they are science-based therapies. While there are credible facilities that do stem cell transplants for conditions such as cancers of the blood, there isn’t sufficient research to support the safety and efficacy for treating other diseases such as osteoarthritis or inflammatory arthritis. As stated by researcher Leigh Turner on CTV news, “you have a lot of companies and clinics setting up shop and there’s this pretty big gap between the marketing claims they make and the current state of stem cell research.” A different article exploring the boom of stem cell clinics in America, found that advertisements use patient testimonial to appeal to consumers, which may just be a result of the placebo effect.
Fitbit’s are wearable devices that individuals can use to track their daily physical activity and increase motivation to do physical activity. Fitbit devices offer real time data on various aspects of daily life including number of steps taken, energy expenditure, time spent asleep, and time spent in different levels of activity. Fitbit devices are becoming increasingly popular in the health-conscious consumer public; they are also being used more frequently in research as measurement tools and to inform healthcare decisions. But are they accurate?
A team of researchers at Arthritis Research Canada and the University of British Columbia, lead by Dr. Lynne Freehan, recently conducted a study to find out how accurate Fitbit devices are as measurement tools. Currently, several devices exist that have been identified as a “research standard” for activity tracking. In this review, researchers measured Fitbit’s accuracy by comparing the readings to that of the research-grade devices.
With summer upon us, millions of Canadian youth are participating in sport activities every day. Sport and recreation is a great way for youth to get exercise, socialize, develop teamwork skills and improve mental and physical health. Unfortunately, the benefits of sport also come with the risk of injury. In fact, one in three youth aged 11-18 years will sustain a sport-related injury that requires medical attention each year, with knee and ankle injuries being the most common. Research has shown that these youth sport injuries, if not treated properly, can lead to osteoarthritis (OA) within 15 years, specifically a form known as post-traumatic osteoarthritis. Youth sport injury can also lead to obesity later in life, which happens to be another major risk factor for OA. This means that youth with 1 major risk factor for OA (joint injury) are in danger of acquiring a second risk factor for the disease (obesity).
Osteoarthritis is caused by the breakdown of cartilage in the joints and affects more than 5 million Canadians nation-wide; the disease can cause moderate to severe pain, disability and even require surgery. Osteoarthritis symptoms generally appear 10-15 years after a joint injury, and by this time the disease is very difficult to treat. Unlike inflammatory arthritis, there are no medications to slow the disease process of osteoarthritis, so preventative measures are of even greater importance. The upside? We can ensure our youth take proper precautions to avoid injury and hugely minimize their risk of developing OA.
Patient engagement in research or patient-oriented research refers to patients, their family members and other informal caregivers partaking in research as more than study participants but as members of the research team. For example, involving patients in some or all parts of the research process from deciding what topic is studied, to how the research is conducted to how the findings are presented and used.
Partnering with patients ensures that health research is both relevant and meaningful to the patient community. For example, in rheumatology, patients’ perspectives have been instrumental in broadening the scope of the research agenda to include more patient-relevant factors such as well-being, fatigue and sleep patterns. These are significant aspects of life with inflammatory forms of arthritis, yet until recently the topics were largely ignored or underrepresented in research and outcome measurement. This example depicts why patient engagement is so critical. If researchers do not work with patients how can they know what they are studying is relevant to the population that will be most affected by it? It is in this context that the saying “nothing about me, without me” applies so strongly. Other benefits of patient engagement include enhanced quality of research with more perspectives considered, meaningful role(s) for patients and greater involvement in their communities, co-learning between patient and researchers as well as getting important research findings to a broader audience. Overall, patient engagement is a promising way to improve healthcare services and patient experience.
Figure that summarizes the components of meaningful patient engagement in research from a patient perspective. Developed by the PIERS Project Team
We had the privilege of chatting with Social Scientist Dr. Laura Nimmon at the Canadian Rheumatology Association (CRA) Annual Scientific Meeting and Arthritis Health Professions Association (AHPA) last month. Laura is an assistant professor in the Department of Occupational Science and Occupational Therapy, as well as a scientist at the Centre for Health Education Scholarship at the University of British Columbia. Laura shared her time with #CRArthritis and sat down with us to answer some questions we had. As patients, we find her research meaningful, and we think you will too! Below are some highlights of the in person interview.
What is a social scientist and what do they do?
Social science is a broad field but can generally be categorized by the study of human society and social relationships. Social scientists aim to understand how our society works and will often use the information they gather to create or promote change within the society.
As a social scientist, how did you become involved in rheumatology?
I entered into the field of rheumatology by being awarded The Arthritis Society Young Investigator Salary Award, which gave me an opportunity to do research in the area. My focus is on teamwork. I look at how healthcare teams coordinate patient centred care and some of the tensions and social dynamics that exist in these interactions. I am conducting this research alongside an incredible team of colleagues consisting of health professionals and patient partners; it is a wonderful combination of minds with different experiences and backgrounds.
Could you share with us the key messages from your presentation at the conference?
Total hip arthroplasty (THA) and total knee arthroplasty (TKA), also known as hip/ knee replacements, are surgical procedures in which parts of the joint are replaced with artificial material to restore function and ultimately reduce pain. As an arthritis patient, if other forms of treatment have not improved the joint’s ability to function or been able to prevent additional damage, your rheumatologist may recommend arthroplasty.
A recent study conducted by a team of Canadian Physiotherapists at The University of Western Ontario has discovered valuable information regarding the impact of prehabilitative care prior to arthroplasty. The team wanted to see if education and exercises for patients before surgery (prehabilitation) impacts pain, function, strength, anxiety and length of hospital stay after surgery (post-operative outcomes).