Check out “Your Guide to Precision and Personalized Medicine for Rheumatoid Arthritis” for more information on this topic.
It’s not easy caring for your rheumatoid arthritis, but the good news is that your doctor is a partner in your care. So, what kinds of conversations are patients having or wish they were having with their rheumatologist when it comes to choosing a treatment, switching medications, reducing flares, and reaching remission? A new CreakyJoints survey sheds some light on this topic.
If you live with rheumatoid arthritis, you’ve probably experienced the intense pain of flares. You may have also experienced that moment of relief when your medication starts working. But getting to that point can be a long and tiring journey. Same goes for reaching remission.
Having an open dialogue with your doctor can help them come up with a treatment plan that considers your symptoms, medication history, personal preferences, and goals. And while communicating with your rheumatologist is essential for feeling your best, it isn’t always obvious what you should be talking about.
For example, are you and your doctor talking about personalized or precision medicine, flares, or remission? To learn more about what our rheumatoid arthritis community knows and wants to learn about these important topics, CreakyJoints conducted an online survey of members with rheumatoid arthritis.
Conducted: June 22, 2022 to July 25, 2022
Number of respondents who completed the survey: 534
Demographics of respondents: All the respondents have a diagnosis of rheumatoid arthritis (RA). The average year of RA diagnosis for respondents was 2008, with the average time since diagnosis being approximately 14 years.
What We Asked
We wanted to understand a few general areas:
- What is people’s knowledge and experience with precision medicine?
- What do people know about RA remission and RA flares?
- How would people like to receive information on each of these topics?
We developed a 15-question survey to delve into these topics.
What We Learned
1. Almost all respondents reported never having discussed precision medicine with their rheumatologist, but conversations about remission and flares are more common.
Out of 534 respondents, 501 (94 percent) said their rheumatologist has never discussed precision medicine with them. About half of respondents (52 percent) said their doctor has not discussed remission with them. However, 369 people (69 percent) said their doctor has discussed flares with them.
For all of these conversations, they were more common in participants who had been diagnosed with RA for more than five years.
2. Despite the lack of conversations, people living with rheumatoid arthritis want to know about precision medicine.
Our survey revealed that despite a lack of conversations happening in the doctor’s office about precision medicine, rheumatoid patients want to know about it and how it could help them.
When asked what precision medicine meant to the participant, over half of respondents (60 percent) answered “it can help reduce trial and error when deciding between medications or when making a medication switch,” with the second most common answer being “it can help me feel more confident in the medicines I take” (42 percent).
Over three-fourths of respondents (82 percent) wanted to know how precision medicine might help their RA treatment, followed by which precision medicine tests were available (75 percent), the accuracy of the precision medicine test (74 percent), what precision medicine is (68 percent), and which tests are covered by insurance (64 percent).
3. Past treatment and side effects are top considerations when switching a medication
From our survey, we learned that patients and their health care providers mostly consider past treatments (83 percent) and side effects (74 percent) when switching medications and therapies.
Participants were able to select all that apply (except for the 5 percent who exclusively said none of the above):
- 62% said insurance coverage
- 44% said personal preferences (such as an injection versus oral pill)
- 33% said additional conditions
- 32% said lifestyle considerations (work, family obligations)
4. Symptom management is an important part of remission for rheumatoid arthritis patients.
When asked about what RA remission means to you and what you would like to know about RA remission, being symptom-free (70 percent) and what helps maintain it (76 percent) were the most popular answers. Here are some of the other most common responses. (People could select all that apply).
When it comes to what RA remission means to you:
- 68% said being pain-free
- 65% said doing the things I want to do
- 54% said feeling like my RA is gone
When it comes to what participants want to know about RA remission:
- 68% said how to achieve it
- 54% said what to do if symptoms return
- 52% said if I can taper or stop my medications once I’m in remission
5. Understanding and dealing with the physical symptoms of an RA flare matters most to patients.
When we asked about what an RA flare means to you, and participants were able to select all answers that apply, the most common answers were related to physical symptoms:
- 89% said stiffness
- 84% said constant pain
- 80% said extreme fatigue
Not surprisingly, respondents wanted to learn more about these physical symptoms. When asked about what they would like to know about an RA flare, the most common answer at 86 percent was the difference between a flare and worsening disease.
Other answers included (participants were able to select all that apply):
- 70% said what helps prevent it
- 65% said what can cause it
- 64% said what to do during a flare
- 48% said how frequently a flare can happen
- 43% said how long it lasts
6. People generally want information from their doctor or CreakyJoints
When we asked about how people would like to receive information about precision medicine, RA remission, and RA flares, in all cases the top preferred methods for receiving information were from the respondent’s rheumatologist and from CreakyJoints.org.
What This Tells Us
Of the rheumatoid arthritis population surveyed, almost all respondents reported never having discussed precision medicine with their rheumatologist — however many patients wanted to know how precision medicine might help their RA treatment. For the majority, precision medicine meant having a tool that can help reduce trial and error when deciding between medications or when making a medication switch.
These results indicate that it would be helpful for patients if their doctor addressed new strategies and tools that aid in making treatment decisions.
More than half of all participants reported having discussed RA remission and flare with their doctor. This could be a good place to start the conversation of precision medicine, coupled with information from CreakyJoints.org to address the top preferred channels for receiving information.
This article is part of “Your Guide to Precision and Personalized Medicine for Rheumatoid Arthritis” and was made possible with support from Scipher Medicine.
Listen: Shilpa’s Rheumatoid Arthritis Journey
CreakyJoints Survey: Precision Medicine Needs Assessment. August 2, 2022.
