The Top 10 Things Patients with Arthritis Want Their Rheumatologists to Know

San Francisco, CA—Seth Ginsberg, BS, Co-Founder, CreakyJoints, and Co-Founder and President, Global Healthy Living Foundation, Upper Nyack, NY, knows firsthand how it feels to be a rheumatology patient. Diagnosed with spondyloarthropathy when he was an adolescent, he co-founded CreakyJoints, an online patient community for people with all forms of arthritis, at age 18 years. Mr Ginsberg shared his insights with attendees of the Coalition of State Rheumatology Organizations (CSRO) 2019 Fellows Conference, in a session titled “10 Things Patients Want (New) Rheumatologists to Know,” which was based on responses elicited from his organization’s online community.

10. Don’t Rush My Visit

Acknowledging the time pressures rheumatologists face and understanding that it may not be feasible for them to spend as much time as they would like with each patient, Mr Ginsberg pointed out the importance of making patients feel as unhurried as possible.

“You could at least let on that you’ll be there in the future,” he said, adding that this reassurance may help to set a patient’s mind at ease.

Although rheumatologists may diagnose several individuals each day and consider this relatively routine, receiving a diagnosis can be devastating for patients and their families. Not only does it take an emotional toll, it is also intellectually taxing, as these individuals scramble to understand new terminology related to their condition.

Taking an extra moment to demonstrate caring and commitment goes a long way toward developing a positive relationship with a patient.

9. Biologics Are Not Painkillers

According to Mr Ginsberg, pain is the most frequently reported symptom associated with almost all forms of arthritis. It is therefore high on patients’ priority lists for their rheumatologists to understand this and offer solutions.

One reason it may appear that rheumatologists are not addressing patients’ pain adequately is the current treatment landscape, he noted. In the current era of biologics and disease-modifying antirheumatic drugs, some may believe that these treatments are a cure-all for patients with arthritis, although in reality, their pain may persist.

8. Give Me a Vocabulary Lesson

The shocking blow that accompanies a diagnosis of arthritis has the potential to be softened by arming patients with knowledge. Unfortunately, jargon that rolls off the tongues of rheumatologists is often completely foreign to their patients.

“Honestly, you don’t have the time to provide that information,” Mr Ginsberg told attendees.

Nonetheless, rheumatologists can point patients in the right direction to educate, and thereby empower, them. CreakyJoints (https://creakyjoints.org) is one of many valuable online resources for patients with arthritis. According to Mr Ginsberg, the glossary is one of the most frequently accessed areas on the website.

“People just need the definition of what these words mean,” he said. “That is why organizations like ours and others exist.”

7. Realistic Diet and Exercise Advice, Please!

Patients with arthritis want to know about diet and exercise, and they need the motivation to get started on a regimen that works for them, according to Mr Ginsberg. If patients receive health and fitness advice from their rheumatologist that is incompatible with their level of ability, however, it is a recipe for failure. One good suggestion for some patients is to get a dog, he said.

“I think those are the types of things that patients so often yearn for,” Mr Ginsberg said. “If you have a few of those nuggets in your pocket that you could share with the patients upfront, it would give them some food for thought, at least get them started a little bit in the right direction.”

6. Don’t Sugarcoat Things

Although it may be difficult to explain to patients with arthritis how their disease will affect their lives, it is a conversation that must take place.

“Enabling people to understand what’s really involved with these conditions is really important,” Mr Ginsberg asserted.

Equipped with the facts, patients will be able to face their condition more effectively, which may make some of the effects and symptoms easier to bear.

5. Be Candid About Flares

Given the recent advances in treatment for arthritis, a month-long flare may be considered an unlikely occurrence.

“That’s almost always the case, but there are long lead times for some of these medications, there is just a lot of life that happens between our office visits with doctors, and some things trigger flares,” Mr Ginsberg said. “It might be a death in the family, getting fired from a job, losing a loved one or a pet, or something like that, and everything kind of snowballs from there.”

Taking a straightforward approach about flares and the worsening symptoms that accompany them will allow patients to have realistic expectations.

4. Explain My Risk for Other Diseases

A primary objective of CreakyJoints is to educate patients about their risk for heart disease and other complications, metabolic and otherwise, so that they can make necessary behavior modifications and monitor for symptoms. Rheumatologists must also play a role in educating patients about these conditions.

“Granted, you’ve got a lot on your plate, you’ve got limited time, and you’re not going to be this patient’s diabetes doctor, cardiologist, oncologist, and so forth. However, you are technically the most important doctor in their suite of specialists,” he said, adding that patients typically see their rheumatologists on a quarterly basis, and that they are the physicians prescribing medications that may come with increased risk for certain complications.

3. Tell Me How to Communicate With You

Patients need to know how to contact their rheumatologists and when to get in touch. In addition, they should understand how to communicate with their rheumatologists when it comes to measuring their symptoms and the success of treatments. Asking patients not only how they have been doing, but also about their hobbies and activities, has the potential to be very revealing, Mr Ginsberg noted. If a patient says that he or she has stopped engaging in certain activities because of a diminished capacity to carry them out, the rheumatologist is able to delve deeper and determine an appropriate intervention.

“But not having that conversation and not being able to communicate at the patient’s level about what they’re going through and focusing strictly on the biology of the disease, the tender and swollen joints, or whatever else you’re going to look at in the pathology, is technically missing the point when it comes to patients,” he said.

2. Check My Mental Health

During a busy, stressful day, rheumatologists may not be inclined to dig into patients’ mental health, Mr Ginsberg acknowledged.

“Asking a patient about their mood is probably a Pandora’s box,” he said, adding that it is nonetheless critical to understand the mind–body connection, particularly in light of an inadequate mental health system in the United States.

Patients need their healthcare providers to care, not only about the disease or condition they are treating, but about each person as a whole.

“You will be a better rheumatologist if you can take a moment to explore their mental health,” he said.

1. Don’t Judge Me

Even when patients have a solid understanding about what they need to do to see the best outcomes, it is not always easy for them to adhere to recommendations. If they feel they are being judged harshly for having stumbled, it could further contribute to poor outcomes and potentially damage the physician–patient relationship going forward.

“Patients are just humans and they want to do better, they want to impress you,” Mr Ginsberg said.

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