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Dr. Cheryl Barnabe – Champion of arthritis care and research in Indigenous communities

Arthritis Broadcast Network had the pleasure of interviewing Dr. Cheryl Barnabe at a #CRArthritis event, a champion of arthritis care and research in Indigenous communities. In this interview, Dr. Cheryl Barnabe, Assistant Professor at the Division of Rheumatology at the University of Calgary, shares with us information from her workshop “Investigating access to arthritis health services for Aboriginal people: A Framework for System Reform”.

Rheumatoid arthritis affects about 1% of the Canadian population or 1 out of every 100 people. This increases to 5% for aboriginal Canadians. This population not only is at greater risk for getting RA but the disease is more severe than with other populations. For aboriginal people rheumatoid arthritis is one of the five top five chronic diseases reported. More Canadian women get RA then men (3:1), however, this figure almost doubles for aboriginal women.

A study conducted by the National Aboriginal Health Organization (NAHO) 2002, by First Nations people for First Nations people, had approximately 22,000 participants making up 238 communities, both on-reserve and off-reserve First Nations people across Canada.

The following highlights some of the results of the study:

  • arthritis is one of the five top conditions to affect the First Nations population
  • more than half (52%) of First Nations adults with disabilities reported having arthritis compared to 14.6% without disabilities
  • 25.3% of First Nations adults have arthritis compared to 19.1% of the general Canadian population
  • there is a higher rate of arthritis among First Nations women compared to other women in Canada, except for women over 60 years of age. The following chart shows the range of difference between these two groups with more than double the First Nations women with arthritis compared to other Canadian women up to age 39 years.

Dr. Barnabe is also a past recipient of the Canadian Institutes of Health Research’s (CIHR) Foundation Grant. Below is the description of the award on the CIHR website:

Developing a more complete picture of arthritis in Indigenous communities

 

 

 

 

 

 

 

 

 

 

 

 

“Most people aren’t aware that women and Indigenous people are at a much higher risk for arthritis, and that kids can get arthritis too.” — Dr. Cheryl Barnabe

CIHR Foundation Grant Recipient

Dr. Cheryl Barnabe
Cumming School of Medicine
University of Calgary

Dr. Barnabe’s Research

Dr. Cheryl Barnabe, a Métis clinician and researcher at the University of Calgary, is exploring why arthritis appears to disproportionately affect Indigenous communities, and what can be done to reduce these disparities. Continue reading

“Nothing About Me, Without Me” – Patient Engagement in Research

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.

Model of patient engagement in research by Clayon

Figure that summarizes the components of meaningful patient engagement in research from a patient perspective. Developed by the PIERS Project Team

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The ARThritis Soirée will be at the Fairmont Hotel Vancouver on Thursday, May 17

Arthritis Soiree for Arthritis Research CanadaHosted by Arthritis Research Canada, the ARThritis Soirée is an evening designed to attract the city’s business and community leaders, philanthropists, doctors, scientists, healthcare professionals, and those who have an appreciation of art and a desire to support arthritis research.

Research has shown art adds to one’s well-being and therefore is a great element in managing chronic diseases on a holistic level. Moreover, art adds an extra factor of excitement and depth to the Soirée each year with the introduction of a different art form.

This year’s event will take place on Thursday, May 17, 2018 at The Roof – 15th floor at Fairmont Hotel Vancouver. The evening’s entertainment will feature Colin James with a guest appearance by RBC Olympian Spencer O’Brien. Fred Lee, CBC, Vancouver Courier and The Province’s Man About Town, and Sonia Deol, Global BC Reporter and Anchor, will be co-emcees for the event. Click here to purchase tickets.

For those attending, remember to participate in the live and silent auction and raffle. The raffle will be for Tag Heuer Carrera Automatic watch, donated by Golden Tree Jewellers. Live auction items include: Continue reading

Virtual reality as pain management for workplace injuries

Researchers at Cedars-Sinai Medical Center, Samsung, Travelers Insurance, Bayer and AppliedVR have teamed up in a new 16-month study to evaluate virtual reality (VR) for pain reduction and therapeutic purposes. The belief is that VR can potentially be a drug-free tool for pain management. Similar VR studies are happening in Canada. Earlier this year, researchers from Simon Fraser University’s Pain Studies Lab recruited people with and without arthritis to play their VR game. Their goal is to understand how VR can be used as a tool for enhancing physical activity, which can help reduce pain.

Image of a man wearing virtual reality VR glasses

 

According to Dr. Brennan Spiegel, director of health services research at Cedars-Sinai, the study will use technology from Samsung, Bayer and AppliedVR as a supplement to manage pain in patients with acute orthopaedic injuries of the lower back and extremities. The study will be funded by Travelers and Samsung. Dr. Spiegel added: “We need to find ways to stem the tide without relying entirely on medicines. Health technology, like virtual reality, has tremendous potential to improve outcomes while saving costs, which is why we’re so excited about this collaboration among academia and industry.”

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Younger patients getting knees and hips replaced. Is this an additional burden on the healthcare system?

New research shows that patients undergoing total joint replacement are younger now than they were in 2000. According to a review from the National Inpatient Sample (NIS) database, the average patient undergoing a total hip replacement (THR) in 2014 was 64.9 years, while the average patient in 2000 was 66.3 years. In parallel, the average patient undergoing a total knee replacement (TKR) was 65.9 in 2014, and 68.0 in 2000.

Dr. Matthew Sloan, lead researcher and orthopaedic resident at the University of Pennsylvania in Philadelphia, tells Reuters Health by email: “These differences may not seem like much, but an average decrease of two years in a pool of 1 million people is a significant difference. It’s also a meaningful difference when you take into account the fact that these total joint replacements have a finite lifespan.”

Dr. Sloan further explains: “The technology for total hip and knee replacements continues to improve. However, at some point, the implant wears out. We believe modern implants without any unforeseen complications should last 20 years or more. The problem with an increasingly younger group of patients having these procedures, it becomes more likely that the implant will wear out during their lifetime. When this happens, a second surgery is required to revise the joint replacement. These procedures are not as successful as the initial surgeries, they are bigger operations, they take longer, and now the patient is 20 years older and not as strong as they were when they had the initial procedure.”

Because a second surgery is riskier and prone to complications like early failure or infection, the goal is to wait as long as possible so that a patient will undergo one surgery in their life. Other findings presented at the American Society of Orthopaedic Surgeon’s annual meeting include: Continue reading

Study participants needed to evaluate an online pain self-management program

The University of Regina is looking for participants to evaluate an online pain self-management program, completed with Do-It-Yourself Guides, Stories and Additional Resources. 

The University of Regina is seeking seniors to enroll in a research study to evaluate a pain self-management program for older adults(www.onlinetherapyuser.ca/olderadults). This program is only offered in English.

Picture of a computer for online programThe research study is led by Thomas Hadjistavropoulos, Ph.D., Professor and Research Chair in Aging and Health, University of Regina. The purpose of this study is to explore the acceptability and effectiveness of a remotely-delivered chronic pain management program tailored to older adults, the Pain Course, when delivered in both online and printed (workbook) formats.

This program requires a 3-month commitment, as participants will have 2 months to work through the course material with a 4-week follow-up period.

Recruitment will take place across Canada and participants will be eligible for the study if they:

  1. are a resident of Canada
  2. are 65 years of age or older
  3. have experienced pain for more than three months
  4. do not have severe depression or anxiety
  5. have regular access to a computer and the internet

Potential participants will be required to complete a preliminary screening and telephone assessment. If participants meet the inclusion criteria, they will be required to complete questionnaires at pre-treatment, post-treatment and 4-week follow-up.

The course includes 5 Core Lessons over a 2-month period, along with Do-It-Yourself (DIY) Guides, Stories and Additional Resources that will be available throughout this period.

If you are interested in joining the chronic pain self-management program for older adults, please follow the link below to complete the preliminary screening: http://uregina.eu.qualtrics.com/jfe/form/SV_ePPMuUKJBXM5jtr

The deadline for potential participants to sign up is Wednesday, April 4th. If you want to learn more about the study, please email Ainsley, the primary researcher, at aam549@uregina.ca.

Study Review: the power of prehabilitation when undergoing joint replacement

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).

Continue reading

Researchers need your help to determine the best way to invite patients to participate in their study!

The study will be on the risk of damage to vision related to taking hydroxychloroquine (HCQ) or chloroquine (CQ) in Canadians living with lupus and rheumatoid arthritis.

The research team at Arthritis Research Canada and the University of British Columbia want to do research to:

  • Accurately determine the risk of damage to vision related to taking HCQ or CQ in Canadians living with systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA)
  • Provide annual vision testing to approximately 3,000 patients with SLE or RA who have been taking HCQ or CQ for more than 5 years

The research team will use a state-of-the-art vision testing method that can detect any signs of damage to vision at an earlier stage before the damage is irreversible. The researchers need your help in designing this research project. They want your opinion about the best way to invite patients to participate in this study:

  • Option 1
    The research team will send a letter to the patients who have SLE or RA and have been taking HCQ or CQ for more than 5 years. The letter will ask the patient to ask their doctor (family doctor or rheumatologist) to send a referral to see an ophthalmologist for the vision tests.
  • Option 2
    The research team contacts the family doctor or rheumatologist directly and requests that the doctor tells their patients with SLE and RA about the study and sends a referral to the ophthalmologist.

Click on this survey link to select your preferred option.

More information about damage to vision related to taking HCQ and CQ

Hydroxychloroquine (HCQ), also known as Plaquenil, and Chloroquine (CQ), are inexpensive anti-malarial drugs commonly used to manage symptoms of systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) because it has been shown to prevent “flares” (episodes when symptoms worsen), prevent disease progression, and help people live longer.

Most drugs have some unwanted ‘side-effects’, such as causing nausea. Research shows that taking HCQ or CQ for long period of time can affect vision, and if not detected on time, it may lead to damages to a patient’s vision. It is recommended that people taking HCQ or CQ for 5 years or more should have their vision tested by an ophthalmologist every year using new technology that detects early changes before they are irreversible.

A recent study by Arthritis Research Canada found that about 40% of those who should have had their vision tested had not had the test within the past 5 years – it was even worse (almost 70% didn’t have their vision tested) if they were not being cared for by a rheumatologist.

Do you have Rheumatoid Arthritis or Lupus? Join the OPAM-IA study!

Participate in a new study that will use wearable activity trackers, paired with a new web application, and physical activity counselling to help you get more active!

Rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) are types of inflammatory arthritis that causes inflammation and> deformity of the joints, and affects your immune system. Physical activity can help to decrease pain and disability in joints affected by RA and SLE while benefiting your overall health.

woman with rheumatoid arthritis looking at physical activity trackerIf you are a person living with RA or SLE, and are interested in getting more active, we invite YOU to participate in the OPAM-IA study. Through participating in the OPAM-IA study, you will learn how to get active with RA or SLE. You will be asked to attend an education session in Metro Vancouver, use a Fitbit Flex activity tracker with the new web application, and receive counselling from a registered physiotherapist. The total time commitment for the study is 6 months. Enrol now to start in January 2018!

If you are interested, please fill out a 2-minute screening questionnaire.All responses will remain confidential, and you will be contacted by a research staff member within 48 hours to discuss your eligibility further.

Survey Link: http://open.arthritisresearch.ca/survey/index.php?r=survey/index/sid/455398/lang/en.

For more information, contact Halima Elmi, study coordinator at 604-207-4053 or 1-844-707-4053 (toll free), or via email at opam.activity@arthritisresearch.ca.

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Had your flu shot yet?

picture of woman getting a flu shotThe latest flu season facts and autoimmune arthritis – A “must” readIf you have not had your flu shot yet, read this “hot off the press” news from the American College of Rheumatology Annual Scientific Meeting presented yesterday in San Diego, California:Temporary Methotrexate Discontinuation for 2 Weeks Improves Immunogenicity of Seasonal Influenza Vaccination in Patients with Rheumatoid Arthritis: A Randomized Clinical Trial.People with rheumatoid arthritis who stop taking methotrexate treatment for just two weeks after they have a seasonal flu shot can improve the vaccine’s efficacy without increasing rheumatoid arthritis disease activity.