Getting “Patient Satisfaction” from Arthritis Health Care: What You Told ACE
In Arthritis Consumer Experts’ (ACE) first JointHealth™ insight of 2018, we share the results of three member surveys conducted at the end of 2017 and learn from you, the person with arthritis (or family member or caregiver), what your disease experiences are like and your journey through the health care system. Are you getting “patient satisfaction”?
In this issue, read about:
Living with arthritis – a personal look
Setting treatment goals and discussing therapy preferences with your health professional
The BC provincial election is on May 9, 2017 – Vote for arthritis!
Arthritis Consumer Experts (ACE) asked British Columbia’s political parties, leaders and candidates to share their views on how to improve arthritis prevention, treatment and care.
Arthritis affects 1 in 5 British Columbia residents and is the leading cause of disability in the province. The economic burden of arthritis is expected to double within a generation and strain the BC health system’s ability to provide quality care to BC patients with arthritis.
ACE sent an open letter and survey to all candidates and political parties running in the upcoming May 9th British Columbia provincial election. ACE has received party responses from the BC Liberal Party, BC NDP, BC Green Party, BC Citizens First Party and the BC New Republican Party to questions regarding models of care, osteoarthritis education, aboriginal arthritis care, reimbursement for inflammatory arthritis medications and flexible work arrangements. To view a political party’s response, click on the links below.
Image courtesy of karate at FreeDigitalPhotos.net/
Sarilumab (Kevzara®) is now approved in Canada to treat moderate to severely active rheumatoid arthritis
Health Canada has approved a new treatment for Canadians with moderate to severely active rheumatoid arthritis. Sarilumab (Kevzara®) was issued its Notice of Compliance on January 12, 2017. Click here to view Health Canada’s Summary Basis of Decision.
Sarilumab (Kevzara®), an interleukin-6 receptor antagonist, has been approved for the treatment of adult patients with moderately to severely active rheumatoid arthritis who have had an inadequate reponse or intolerance to one or more biologic or non-biologic Disease-Modifying Anti-Rheumatic Drugs (DMARDs). Continue reading →
Now that psoriatic arthritis (PsA) is viewed as its own disease entity and no longer as a relative of rheumatoid arthritis, trends in PsA care have started to change. Methotrexate has become a first-line treatment for PsA patients, and at the American College of Rheumatology (ACR) annual meeting this week, the spotlight was on new disease modifying antirheumatic agents (DMARDs) for PsA. According to Dr. Laura Coates, National Institute for Health Research Clinical Lecturer in Rheumatology at the University of Leeds, United Kingdom: “It is quite an exciting time for psoriatic arthritis because we are getting new drugs that are specific for PsA. A lot of the newer drugs focus on the Il-17 pathway, which is a different part of the patient’s immune system (than what previous medications targeted) and which seems to be particularly important for psoriatic arthritis, psoriasis, and spondylitis arthritis.” Continue reading →
Today at the ACR annual meeting, attendees at a symposium on the benefits of exercise heard presenters encourage arthritis patients to include physical activity into their treatment, something that was unheard of at a meeting like this 20 years ago.
Dr. Vilet Vlieland, Professor in the Department of Orthopaedics, Rehabilitation and Physical Therapy at Leiden University Medical Centre in the Netherlands, said it’s important for an experienced therapist to implement tailor-made exercise programs for arthritis patients, consisting of routine and planned activities, monitored by regular assessments. Continue reading →
An arthritis ‘pacemaker’ is on the horizon. The device is a tiny electronic implant fitted under the skin near the collarbone. It works by sending electrical pulses to the vagus nerve. When the vagus nerve is stimulated by the electric pulse, it sends a signal from the brain to key organs such as the spleen and triggers a decrease in the production of cytokines. Cytokines are proteins that help regulate the immune system and can cause inflammation in joints.
The arthritis ‘pacemaker’ is currently being tested in the Netherlands with people who live with rheumatoid arthritis (RA). Scientists found that the use of electrical pulse can have a similar positive effect on RA without the side effects of medications. The medical device should be available in the United Kingdom by 2020. A patient who took part in the pilot study said: “I have my life back, like before I got arthritis.”
In an interview with the Daily Mail, Clare Jacklin of the National Rheumatoid Arthritis Society cautions: “The disease is different in different people. This new device may well be impactful for some patients dependent on their disease profile.”
The European League Against Rheumatism (EULAR) has published updated recommendations on the management of fibromyalgia. The detailed recommendations can be found in the Annals of the Rheumatic Diseases.
Fibromyalgia is a condition characterized primarily by chronic widespread pain (CWP) in the muscles, ligaments and tendons, and a heightened sensitivity to touch resulting in pain that can last for months.
EULAR Press interviews Cheryl Koehn on patient satisfaction and RA treatment
Cheryl Koehn discusses the importance of treatment conversations between patients and healthcare professionals.
This year’s European League Against Rheumatism Annual Congress (EULAR2016) highlighted patient-focused initiatives that aimed to:
Improve the understanding of the patient perspective
Encourage patient participation
Optimize care of rheumatic diseases
One of the initiatives is the RA NarRAtive initiative – a patient survey fielded in 15 countries around the world and designed to evaluate the patient/healthcare professional relationship and communication and patients’ experience and satisfaction with treatment and disease management. To view the interview with Cheryl Koehn, please click here.
“Further understanding the responses from this survey will be important to facilitate communication between patients and healthcare professionals, with the ultimate aim of improving treatment outcomes,” said Ms. Cheryl Koehn, President of Arthritis Consumer Experts and member of the RA NarRAtive global advisory panel.
To learn more about the study, please click here to view the press release.
A team of student engineers from William Marsh Rice University, a private research university located in Houston, Texas, has developed a robotic horse that may help patients with arthritis. Based on the premise of hippotherapy, also known as equine-assisted therapy, the horse simulator is a robotic horse that can be ridden indoors anytime.
Hippotherapy relies on horses to improve the symptoms of patients with neurological or physical illnesses like autism, cerebral palsy, and arthritis. The rhythmic, swinging motion passes through the entire body and is thought to enhance balance, coordination and motor development. This form of treatment is prohibitive because of its cost and accessibility. Physical therapy sessions with a horse can cost upwards of $150 an hour. Continue reading →
A recent study suggest that the risk of a flare increased by more than three-fold over 1 year when patients in remission, or with stable low disease activity, from rheumatoid arthritis (RA) stopped their anti-tumor necrosis factor (TNF) treatment. The study had 816 patients who had used a TNF inhibitor for at least 1 year and stable doses of conventional disease-modifying anti-rheumatic drugs for at least 6 months.
In the study, a patient’s remission was defined as a disease activity score in 28 joints (DAS28) below 6.2, or had a low disease activity (a DAS28 below 3.2), for at least 6 months. Participants were also considered stable based on rheumatologists’ clinical impression in combination with a baseline DAS28 below 3.2 and at least one C-reactive protein (CRP) level below 10 mg/L in the 6 months prior. A flare was a DAS28 score of 3.2 or higher with an increase of 0.6 or more compared with the baseline DAS28. Participant’s mean age was 60, with mean disease duration of 12 years.