Treating patients with rheumatoid arthritis (RA) is as much an art form as it is a science. There are no cures, only treatments for the symptoms. Sometimes symptoms will go into remission, but the underlying condition will always remain.
Then there are the treatment options, which are numerous because a disease such as RA does not lend itself to cookie-cutter therapy. This vast array of treatments often comes with a hefty price tag, and for many patients, it’s an additional burden that will weigh on them perhaps as much as the physical symptoms they are experiencing.
When you add this all together — the complexity of the disease, the available treatment options, and the demanding costs — what you are left with is a situation that goes far beyond simple diagnosis and treatment. For patients to achieve successful outcomes, they must enlist themselves into the decision-making process, educate themselves on the options, and clearly articulate their concerns to their treating physician. Clinicians, in turn, need to take time to listen to these concerns, educate their patients, and present their options.
The barriers to such a doctor-patient relationship, however, are multifaceted, according to Jonathan Krant, MD, a rheumatologist and chief of medicine at Adirondack Health System in Saranac Lakes, New York. Dr Krant recently spoke with Rheumatology Advisor and discussed some of the issues facing patients with RA, in addition to the roadblocks their treating physicians face in providing more patient-centered, comprehensive care.
He is also the medical director of CreakyJoints, a website that provides educational information, support options, and advocacy for patients with arthritis. The site is part of the nonprofit Global Healthy Living Foundation, which provides information and services focused on those with chronic illnesses, such as RA. CreakyJoints recently published its first patient-focused guide on living with RA, and Dr Krant explained how such a guide can help provide a blueprint to construct a more informed, shared decision-making relationship between physicians and patients.
Rheumatology Advisor: CreakyJoints recently published the first edition of its patients’ guidelines document. What makes this unique compared with other guidelines?
Dr Krant: It’s a guide for physicians in terms from a patient’s perspective of care, as well as a manifesto for patients who are looking to understand the disease state, the drugs used to treat it, and expectations of therapy, which are often not articulated by treating physicians.
Rheumatology Advisor: As a practicing rheumatologist, have you found that your patients don’t ask enough questions about the treatment process?
Dr Krant: Well, oftentimes patients want to please you; they are delighted you are taking care of them. We [rheumatologists] are in very short supply as a subspecialty in medicine, so they are glad to have gotten an appointment. But when you engender a relationship with your patients, they are often not willing to divulge that the cost to them is expensive, copay requirements are extraordinary, the toxicity of the therapy, be it the drug itself or in combination with existing drugs, is creating havoc.
I think there is a real disconnect between what physicians would like to learn from their patients and what their time constraints allow them. This kind of document is informative because it tells physicians they are not listening to your patients if you don’t ask them these questions. It says to the patients, here are the topics that you need to talk about with your physician. So we are caught between Scylla and Charybdis: diminished reimbursement, no time, extensive bookings, and the potential toxicity of the drugs we use. We are not doing a good enough job of figuring out what matters to the patient.
Rheumatology Advisor: Does your clinic schedule allow you time to discuss with your patients topics like the impact of cost and alternative treatment options?
Dr Krant: In my 30 years of experience, most subspecialists are guilty of not asking the right questions. They are stripped of time to do a good enough job to canvass what the patient considers important. There is a huge disconnect between a patient’s perceived, or desired, outcomes and what physicians [see], who look at objective evidence of disease activity, but neglect the fact that steroids cause sleep disturbance, altered sexual function, diminished cognition, as examples. These are things you don’t have time to ask your patients about, and the patients are often reluctant to share their concerns about how these medicines affect their activities and daily living.
There is a widening gulf between what patients want to hear and what physicians articulate. That’s a big problem, and I’m not sure what the answer is at this point, except to identify the problem and then move forward.
Rheumatology Advisor: Does providing your patients with something like the guidelines from CreakyJoints provide them with a systematic checklist of items to discuss with their physician? What can it do to help physicians provide more comprehensive care for their patients?
Dr. Krant: Sometimes patients will need to drive the program when it comes to addressing topics about care that lie outside simply the treatment of symptoms. Physicians often don’t have the time to address the needs of their patients; what they address are physiologic manifestations of disease activity, and they satisfy themselves that they are doing a good job when they are missing 90% of what matters to the patient. That’s one of the structural constraints that limits the relationship between a doctor and a patient.
Rheumatology Advisor: What is the end goal for these patient guidelines — what would make this effort a success in your view?
Dr Krant: What would really make my Christmas lights glow would be to see all physicians sensitive to these kinds of patient-reported outcomes. We are using more and more patient-reported outcomes and incorporating them into the way physicians care for their patients. It would also mean hiring more nurse practitioners and physician assistants to really run the program, but then physicians take more time with each patient and be able to articulate their concerns as being 1 of the metrics of disease response.
My goal is to get patient-reported outcomes incorporated into the assessment of physician performance. So we must do a better job of understanding what the patients want, not just what we perceive they want, and capturing their voice is very important.
Rheumatology Advisor: In the current climate, what is the biggest obstacle to deal with some of these communication issues?
Dr Krant: It’s time and payment. Diminished reimbursement is driving us to see more patients. I have to see more patients because reimbursement is fixed and dropping. It’s an unwinnable paradigm at the expense of effective communication. Under the current situation, the likelihood of this improving is slim to none. It will require a restructuring of how healthcare is currently delivered.
Rheumatology Advisor: So the problem is that the current healthcare system here in the United States rewards volume of care, and not quality of care?
Dr Krant: Agreed. We are on the same page.
Global Healthy Living Foundation. Raising the voice of the patients: a patient’s guide to living with rheumatoid arthritis. Published January 20, 2017. Accessed January 30, 2017.