Taking the journey together: Shared decision-making in psoriatic disease
The doctor-patient relationship is evolving from a paternalistic to a collaborative model of care across the rheumatology specialty.
The days of a rheumatologist arriving at a treatment decision and then dictating it to a patient with psoriatic disease may soon be numbered. Many patients are informed, empowered and vocal about the goals they hope to achieve from therapy and in their battle with psoriatic arthritis. Shared decision-making in the clinic appears to be the way forward.
“Shared decision-making is a process by which the clinician informs the patients of all their available options that are rational given the current scenario,” Liana Fraenkel, MD, MPH, of the department of rheumatology at the Yale School of Medicine, told Healio Rheumatology. “Physicians should then explicitly outline the benefits and potential harms associated with each of those and help the patient deliberate between those options and arrive at a choice.”
Of course, physicians have significantly more know-how in terms of disease activity and the mechanism of action of any given therapy, but patients know what they want out of life. The objective is to merge those factors.
“Patients tell me they want to improve their golf game or kneel on the floor with their grandchildren,” Sonali Parekh Desai, MD, assistant professor of medicine in the departments of rheumatology, immunology and allergy at Harvard Medical School, said in an interview. “As a physician, I want to see lab tests improving or less swelling in their joints. When we establish these factors, it sets us on course to get on the same page about a treatment plan.”
Rheumatologists can also raise issues that patients may not consider. “I ask whether they are afraid of needles, or if they would rather give themselves an injection or come in once a month for an infusion,” Desai said. “If they are taking an oral medication, we discuss whether they can remember to take a pill two or three times a day. I try to unpack all of the parameters of their treatment.”
The evolution to a shared model of care has not happened overnight. Decades of movement in this direction led to U.S. Section 3406 of the Affordable Care Act, which provides funding for the establishment of standards for certification of patient decision aids to assist physicians in the all-important process of explaining diseases and their treatments to patients and arriving at decisions together.
There is a rationale for this approach. When patients feel some sense of ownership over their own care and trust their doctors to help them meet goals, medication adherence improves, along with outcomes.
But many view the process of shared decision-making as a challenging one. Consequently, uptake remains sluggish. “Is it actually done in clinical practice very often?” Fraenkel said. “I would pretty comfortably say no.”
Moreover, PsA demands multidisciplinary care, which can lead to a number of clinicians weighing in on any given case. Complications can arise for both doctors and patients when there are too many voices in the mix. To that point, many patients bring their spouse, child or other family member to doctor visits, which can further complicate matters.
Experts like Fraenkel believe in shared decision-making. She stressed that it is done more often with patients who are empowered to ask more questions. It is up to rheumatologists to create a space for patient empowerment, and to “get a conversation going.”
Taking the Journey
Once the conversation begins, rheumatologists have plenty of time to keep it going, given the lifelong nature of psoriatic disease. With that in mind, one of the first components of shared decision-making is to help patients understand that PsA will not simply go away in a matter of weeks with a few pills or injections.
“I try to address the chronicity of PsA as part of the initial consultations,” Desai said, and added that she highlights how both the disease and the treatments used to manage it can impact them over time.
“Patient care will begin with a thorough understanding of the symptoms that concern the person presenting with psoriatic disease, their severity for the individual and how they impact on their quality of life,” Peter C. Taylor, MA, PhD, head of experimental rheumatology at the Botnar Research Centre, and of the Nuffield Department of Orthopedics, Rheumatology and Musculoskeletal Sciences at the University of Oxford, said in an interview.
Helping patients understand the extent of skin and musculoskeletal involvement at the outset of their treatment is critical, according to Taylor. “It is also important to establish other comorbidities, and whether the patient is already on treatment for them,” he said.
Clearly laying out all of these factors serves one important purpose, according to Daniel Aletaha, MD, MSc, associate professor of medicine in the department of rheumatology at the Medical University of Vienna. “Patients may not perceive the long-term risks of uncontrolled disease,” he told Healio Rheumatology.
Reality of Treatment Risk
Perception is quite different when it comes to the risks associated with PsA therapies, according to Aletaha. “They absolutely do perceive the risks of treatment,” he said.
An important consideration is that patient assumptions about the long-term risks of PsA therapies may not always be accurate. “They may end up fearing the wrong drugs,” Aletaha said.
Steroids are the classic example of this. Their widespread use has bred a potentially dangerous familiarity. “Patients may not understand how harmful steroids are in the long-term,” Aletaha said.
Rheumatologists must walk the fine line of acknowledging patient fears, but also explaining which of those fears are warranted and which are not, according to Taylor. He added that clinicians must lay out “realistic expectations for treatment.”
The sum total of all of this is honesty. At the outset of the relationship, clinicians treating PsA must explain these hard truths to their patients: that the disease is likely to last a lifetime; that the treatments are not curative; and that the treatments may come with side effects. A clinician who is able to navigate these conversations early on is en route to achieving the ultimate goal of shared decision-making: trust.
“Once trust is established, the physician and patient embark together on a journey towards attaining the best achievable well-being,” Taylor said.
A growing body of data is beginning to affirm the idea that the trust borne from shared decision-making can pay off in actual outcomes.
In a cross-sectional survey published in Patient Preference and Adherence, Lofland and colleagues investigated 204 patients with rheumatoid arthritis or PsA and 102 patients with inflammatory bowel disease to determine parameters pertaining to shared decision-making associated with biologic therapies. Results showed that patients who engaged in a shared model had greater likelihood of treatment adherence (P < .05) than their counterparts who did not participate in this model of care. They also had higher satisfaction rates with their therapeutic regimen and greater activation (P < .001) than those who did not share in decisions.
“In my mind, it is really pretty simple,” Anthony Fernandez, MD, PhD, director of Medical Dermatology at the Cleveland Clinic, said in an interview. “If patients feel like their treatment decisions are based on a partnership that includes their input, a stronger physician-patient relationship will be built. In turn, this is likely to lead to better compliance and better outcomes.”
Raising the Bar
From the physician end of the equation, understanding what patients with PsA want from their care is probably the simplest route to success in shared decision-making. “The highest priorities for patients are pain and function, not swelling or some lab value,” Aletaha said. “The patient wants to cope with symptoms, whereas rheumatologists want to think about the future as well as the present. The challenge is to reach some sort of reconciliation. If we can do that, we can raise the bar of practicing medicine.”
But raising the bar is difficult when there are no recommendations on the subject, and few data sets to guide the way.
Aletaha and colleagues aimed to rectify that situation. In an abstract submitted to the 2018 American College of Rheumatology annual meeting, he presented findings on 85 patients with PsA treated with myriad approaches, including oral drugs, self-injected therapies, clinic injections or monthly infusions. The aim was to determine which of these approaches is preferable to patients.
Results showed that oral medications were the overall first choice, followed by self-injection, monthly infusion and clinic injections. U.S. patients had a stronger preference for oral medications than their European counterparts. Speed of administration was the most commonly cited benefit of oral medications, while home administration was the key benefit for self-injection.
Desai encouraged clinicians to dig deeper into both treatment preferences and the background information on their patients to provide the full picture. “I might tell a patient, yes, it is a pill that you take once a day, but it has a black box warning for depression and suicidality, so maybe this is not the best choice given your prior history of depression and anxiety,” she said.
A further consideration is the risk of the medication in the context of the patient’s other health conditions, according to Desai. “The patient may think that they would rather give themselves a shot than come in for a monthly infusion, but then they have such a strong needle phobia that every Sunday night when they are getting ready to give themselves their Humira they have a panic attack,” she said.
Another factor is that the perception of risks and benefits can vary from patient to patient. “Some patients want to control inflammation however possible,” she said. “Others may be willing to take on more risks with a medication that can provide complete skin clearance.”
It is up to the rheumatologist to unpack all of this if they are to truly reach their full potential, according to Fernandez. But there are other ways that rheumatologists need to elevate their game, one of which is to adhere to the ACR’s recent push toward a treat-to-target strategy.
In a recent editorial in the International Journal of Rheumatic Diseases, Paul R. Falzer, PhD, raised the question of whether a collaborative treatment approach could be applicable in a treat-to-target paradigm. Results of a questionnaire administered to 156 patients with RA showed that “that there is substantial commonality between how patients and practitioners assess progress, and that discrepancies may be complementary and addressed through interaction.” He suggested that further studies should attempt to increase efficacy of shared decision-making in a treat-to-target scenario.
“Shared decision-making is becoming more mainstream because it is now part of teaching curriculums, so residents are evaluated on it as a core skill,” Fraenkel said. “It is included in certain recommendations for treating to target.”
Whether shared decision-making will lead to improvements in treating to target remains to be seen. What is certain is that individuals with psoriatic disease are often treated by multiple clinicians, each of whom may have their own targets for treatment in mind.
Too Many Cooks
“Psoriatic arthritis is the ultimate disease that can challenge the idea of ‘too many cooks’,” Aletaha said. He acknowledged that dermatologists are often happy to have a rheumatologist handle the musculoskeletal complications, but he stressed that when primary care, cardiology, pulmonology and other experts get involved, as they often do, patient confidence in their care may suffer.
“It can be difficult and dangerous for a patient to be getting too much information from too many sources,” Aletaha said. “There can be a disconnect in the nuance of information that creates congestion for the patient.”
Most of the interviewed clinicians acknowledged that the decision of who ends up running point on any given patient is made on a case-by-case basis. “It varies from patient to patient,” Fernandez said.
Fostering productive relationships with every member of the care team is critical for Fernandez. “When you can really find rheumatology or GI colleagues who truly collaborate and do not feel like the final decision needs to be made by them all the time, it becomes a much more productive relationship and one that is rightfully centered around the patient,” he said.
Conversely, working with a stubborn colleague — or being stubborn yourself — can lead to a “frustrating and unfulfilling” process, according to Fernandez. When this is the case, patients suffer, and outcomes are often suboptimal.
“Collaborative care is best, but when it comes to making decisions with a patient, you have to narrow it down to one physician who can sort out and distill all of the information and help them move forward with a choice,” Fernandez said.
If there is an X factor in this whole scenario, it is the omnipresence of the internet as a source of information in a patient’s life. “The internet is a double-edged sword, because it can obviously be very helpful or very unhelpful,” Fernandez said.
Although PsA impacts a lower percentage of patients compared to psoriasis, Fernandez acknowledged that “this doesn’t mean there is less misinformation” about it. “When appropriate, I try to convey to the patient that what they are reading online may not be accurate,” he said. “I try to troubleshoot and minimize the misinformation.”
Fernandez views the process of debunking misinformation as an opportunity. When a doctor can successfully convince a patient that the information is incorrect, and then follow through with a treatment plan that leads to a positive outcome, the patient is likely to believe that the doctor has expertise in the disease, and has their best interests in mind. “Now you have really gained their trust,” he said.
If there is another person whose trust is a factor in treatment decisions, it is the spouse or family member many patients with PsA bring to the clinic.
“If the patient chooses to have a family member there, the assumption is that they are engaged in the process,” Fraenkel said.
In general terms, most clinicians are happy to have another voice in the room. It helps the patient feel comfortable and can break the tension if any sort of miscommunication arises. In addition, having a family member present — particularly a spouse — can head off disagreements within the marriage or partnership and prevent messages from getting lost in translation.
“I can give you examples where I have a patient who requires escalation of care and they go home and their spouse doesn’t like the idea of them being on medication,” Fraenkel said. “It can make things considerably more difficult for the patient. So, if the spouse is there hearing why it is so important to escalate care or advance to a biologic, it is generally helpful.”
Room for Improvement
While Fraenkel practices shared decision-making, she acknowledged that it is not easy. “Many physicians and patients alike would much prefer the doctor to say, ‘This is the right medication for you,’” she said.
Part of the problem has nothing to do with willingness, or lack thereof, on behalf of doctors and patients to share the decisions. “Patients have come to expect that they will go to the doctor and the best medication for their condition will be prescribed to them,” Fraenkel said. “Unfortunately, we do not have that capability yet in rheumatology.”
The field is not yet at the point where it is possible to take a blood sample, assess a biomarker, and prescribe a drug. A companion point is that, even if the doctor and the patient can agree on a treatment course, cost and insurance coverage often pose significant barriers straight out of the gate.
Fraenkel describes being “frustrated and discouraged” when a patient is unable to access the medication that they have chosen after engaging in a shared decision-making process.
That said, she offered a solution. “Some practices now have a pharmacist that can actually run the options and give that information to you in real time,” she said. “That is very helpful.”
But many practices do not have such resources, which is why Fraenkel supports transparency in drug costs. “The bottom line is patients cannot truly consider their options until they know what the cost (i.e. co-pay) of each medication is,” she said.
While the clinician should take the lead in facilitating communications, sometimes the problems extend far beyond anything the clinician could possibly conceive, according to Desai. “Sometimes the patients’ prior experiences either with the health care system or with the particular clinician or with a particular medication really can color their ability to think through the decision they are trying to make,” she said.
For Fernandez, patience is critical. “Rather than trying to convince a patient to take this drug for the rest of their life, sometimes I tell them, ‘Let’s try this for 3 months’,” he said. “More often than not, they are having better results than they might have anticipated, and they feel good enough to continue. This can help to develop a strong physician-patient relationship.”
Both Taylor and Aletaha underscored this back-to-basics approach. “Even when there are restrictions to the availability of treatment choices — for example, because of reimbursement issues — the line between recommending a preferred treatment choice and respecting the input and preferences of patients can always be walked with compassionate care by ensuring good quality communication,” Taylor said.
“Don’t make things overly complicated,” Aletaha added. “Whether you are initiating a drug, or reducing or switching, if you explain to the patient in simple terms what you are thinking about, in all likelihood the patient will understand.”
- Aletaha D. Abstract #2366. Presented at: 2018 ACR/ARHP Annual Meeting. October 19-24, 2018. Chicago.
- Falzer PR, et al. Int J Rheum Dis. 2019; doi:10.1111/1756-185X.13664
- Lofland JH, et al. Patient Prefer Adherence. 2017; doi: 10.2147/PPA.S133222.
- Strohal R, et al. J Eur Acad Dermatol Venereol. 2015;doi: 10.1111/jdv.13248.
- For more information:
- Daniel Aletaha, MD, MSc, can be reached at Spitalgasse 23, 1090 Wien, Austria; email: email@example.com.
- Sonali Parekh Desai, MD, can be reached at 60 Fenwood Rd., Boston, MA, 02115; email: firstname.lastname@example.org.
- Anthony Fernandez, MD, PhD, can be reached at 9500 Euclid Ave., Cleveland, OH 44195; email: email@example.com.
- Liana Fraenkel, MD, MPH, can be reached at PO Box 208031, 300 Cedar St., TAC Bldg., New Haven, CT 06520-8031; email: firstname.lastname@example.org.
- Peter C. Taylor, MA, PhD, can be reached at Windmill Rd., Headington, Oxford, OX3 7LD; email: email@example.com.