Patient empowerment and education are important parts of rheumatology care.
According to a recent study from the University of California, Davis, Department of Family and Community Medicine, an empowered patient is more likely to follow treatment, take an active role in their care, and work in partnership with their healthcare team.1 The study also showed that including patients in the treatment and care-planning discussion also reduced additional visits, testing, and medical costs.
To help its members educate and empower their patients, the ACR offers free patient education fact sheets that explain diseases, medications, and different rheumatology topics.
“The fact sheets were created to help rheumatologists and rheumatology healthcare professionals explain rheumatology topics to their patients,” says Nancy Ann Shadick, MD, MPH, ACR member and a rheumatologist in the Division of Rheumatology, Immunology, and Allergy at Brigham and Women’s Hospital in Boston. “Developed by ACR members, the fact sheets cover more than 50 diseases, conditions, and medications, including lupus, osteoporosis, and rheumatoid arthritis. They also provide information on the different members of the rheumatology care team and other topics of note such as exercise and arthritis, sex and arthritis, and living well with rheumatic disease,” says Dr. Shadick.
More than 100,000 monthly website visitors rely on the information in the ACR’s patient fact sheets, and the these sheets are often placed in physician waiting rooms, distributed to patients during a consultation, and posted on media websites as resources.
“These are truly valuable to both the patient and rheumatologist as they help ensure the patient’s understanding of rheumatology topics as they pertain to him or her,” says Dr. Shadick. “The ACR Communications and Marketing Committee is currently reaching out to members to update all the fact sheets—including those written in Spanish—by the end of this year,” she says.
If you need help educating and empowering your patients, access this free resource by visiting www.rheumatology.org/practice.
Reference
Patient Fact Sheet
Several times a year, the ACR will feature a recently updated patient fact sheet in part or full in “From the College.” This month’s fact sheet is Metabolic Myopathies, written by Robert L. Wortmann, MD.
Metabolic Myopathies
Metabolic myopathies are genetic diseases, usually inherited, that affect the body’s muscles. [Metabolism refers to chemical reactions that provide energy and nutrients, or substances necessary for health and growth.] Some people with a metabolic myopathy (muscle disease) develop weakness; others tire easily with exercise or physical activity, suffer muscle pain after physical effort, and/or experience severely swollen and tender muscles. These symptoms occur when muscle cells don’t get enough energy. Without enough energy, the muscle lacks enough fuel to work properly.
Most metabolic myopathies tend to run in families, appearing at any age in those who inherit the disease. Either parent or another relative may have been symptomatic. However, metabolic myopathies can develop in a person with no family history of the condition. Most often, physicians diagnose metabolic myopathies by testing a sample of muscle tissue (biopsy), which is taken through a needle or with a small incision under local anesthesia. However, more recent techniques allow diagnosis by testing blood samples.
Treatment varies by myopathy, but is focused on changes in physical activities, aerobic exercise training, changes in diet, and the use of various vitamins or supplements.
According to the patient fact sheet writer, Robert L. Wortmann, MD, “Metabolic myopathies are rare, so diagnosis can be delayed.” Dr. Wortmann also says, “Despite the fact that metabolic myopathies are inherited, treatments can help many people with these diseases live normal lives.”
Many different diseases and conditions can cause muscle symptoms and it is important to see a rheumatologist to determine the diagnosis responsible for the symptoms.
