A new survey of more than 3,600 adults living with rheumatoid arthritis (RA) shows that a patient’s perception of their disease and treatment, as well as their relationship with their healthcare professional, can positively impact the management of their disease.
The RA NarRAtive survey, created and sponsored by Pfizer, is part of an international initiative aimed at promoting the role of the patient in the successful management of RA. The survey also sought to identify the barriers experienced by patients in achieving optimal treatment management and to suggest strategies to improve outcomes.
Survey results indicate that some of the keys to successfully managing RA include a patient’s ability to have an open dialogue and to set treatment goals with their physician, as well as the ability to connect with patient support groups.
The survey also indicated that optimal RA management might not occur when patients don’t feel encouraged to express goals, ask questions and accurately convey their satisfaction or dissatisfaction.
“The survey tells us that as doctors, we may not necessarily be doing as good a job as we believe,” says Dr. Ara Dikranian, senior rheumatologist at the San Diego Arthritis Medical Clinic and a member of the RA NarRAtive Advisory Panel, a group comprising 27 RA experts, including physician and patient-group leaders from around the world.
Despite the importance of patient–doctor communication, the survey revealed that, in the U.S., 41% patients who currently visit a doctor to manage their RA report feeling uncomfortable raising concerns and fears with their physician, and approximately 22% of patients worry that if they ask too many questions, their doctor will see them as a difficult patient and it will affect the quality of their care.
“Based on the results of this survey, we’re seeing that RA patients want doctors to put more emphasis on talking to them about their treatment goals,” Dr. Dikranian says.
Setting Treatment Goals
The survey also found disconnects between treatment satisfaction and status of the disease. While more than 4 in 5 RA patients who are taking prescription medication say they are satisfied with their treatment regimen, only 26% of those say their RA is “under control.” In addition, of those currently taking medication to manage their RA, three in five wish they could change something about their current RA medications.
Group appointments allow doctors to treat more patients, spend more time with them, … & improve health outcomes.
“We learned that sometimes patients and their rheumatologists don’t share the same treatment goals,” Dr. Dikranian says. “For example, a physician may want to prescribe a certain medication to alleviate RA symptoms, but the patient may not be willing to take risks associated with the medication.”
The survey showed that although 89% of all RA patients surveyed say they have goals for managing their condition, 76% of those who currently see a rheumatologist to manage their RA have not set treatment goals with their doctor.
Going Beyond Office Visits
Given that rheumatologists typically have a limited amount of time to spend with each patient, Dr. Dikranian encourages physicians to look at non-traditional ways to counsel and empower patients outside of office visits.
“There are RA support groups where patients can get more information on such topics as dietary therapy and how to handle fatigue,” Dr. Dikranian says. “Websites including Creaky Joints, also offer support and education to RA patients and their families.”
Other ways rheumatologists are working to enhance patient communication include:
- Empowering Patients: Cindy McDaniel, senior vice president of consumer health for the Arthritis Foundation in Atlanta, says the Arthritis Foundation’s Better Living Toolkit provides patients with a health tracker and information about how to manage their RA, as well as a guide to arthritis.org and a jar opener that makes everyday tasks easier.
“The health tracker allows RA patients to track their pain in a symptom journal,” Ms. McDaniel says. “Patients can then share the information with their doctors to help form a treatment plan.” - Educational seminars: Rheumatologists at the Eastern Maine Medical Center held a free educational seminar in November 2014 that outlined RA symptoms and highlighted the advanced treatments that can target inflammation and reduce symptoms. Catholic Health in Buffalo, N.Y., has also offered free seminars where a rheumatologist presents an overview of the disease, discusses symptoms, prevention strategies, diagnosis and treatment options.
- Group appointments: In recent years, Dr. Dikranian notes that some doctors have begun holding group appointments where they see up to a dozen patients with a chronic condition, such as RA, all at once. According to the American Academy of Family Physicians, the number of group appointments offered by physicians has doubled since 2005.
Group appointments allow doctors to treat more patients, spend more time with them, increase appointment availability and improve health outcomes. A typical session lasts two hours and is covered by insurance, and patients sign an agreement promising not to disclose what they discuss at the meeting. - Support groups: Ms. McDaniel says the Arthritis Foundation offers both in-person support groups through their chapters around the country and also online.
In addition, many medical centers offer their own support groups for RA patients. The Hospital for Special Surgery (HSS) in New York offers two free support and education groups for people with RA. Its Living with RA: Lecture, Lunch and Conversation meets 10 times per year on the third Thursday of the month from noon to 2:00 p.m. Lectures by arthritis care experts are followed by a discussion facilitated by a clinical social worker and a rheumatology nurse.
The HSS also offers an Early RA Support and Education Program. This free four-part session is available to people recently diagnosed with RA or early RA. Following the weekly lecture on essential information about RA and its treatment, a social worker and rheumatology nurse facilitate discussion among participants.
Linda Childers is a health writer located in the San Francisco Bay Area.
Survey Seeks Physician Point of View
The RA NarRAtive survey is an ongoing initiative sponsored by Pfizer and led by the Global RA NaRAtive advisory panel.
“To complement the patient survey, we recently sent a corresponding survey to physicians,” Dr. Dikranian says. “We expect to have the results in around the end of 2015.”
For more information on the RA NarRAtive survey, and to download resources, visit Pfizer.com/RANarRAtive.