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Using Preference Phenotypes to Enhance Communication, Facilitate Treatment Decision-Making, and Personalize Care

VBCR - April 2018, Vol 7, No 1 - Rheumatoid Arthritis
Leslie Wyatt

For patients with rheumatoid arthritis (RA), therapies involving a treat-to-target approach are ideal, but may be challenging to implement because of the need for continuous disease monitoring, potential therapy modifications, and maintenance of remission or low disease activity. The difficulty in deciding how to adjust treatments is exacerbated by the wide range of effective treatment options currently available for patients with this condition. However, results from a recent study demonstrate that treatment preference phenotypes may be used to enhance shared decision-making and facilitate implementation of a treat-to-target strategy (Fraenkel L, et al. Ann Rheum Dis. 2017 Dec 15. Epub ahead of print).

Using Preference Phenotypes to Enhance Communication, Facilitate Treatment Decision-Making, and Personalize Care

“Asking physicians to help patients compare and contrast triple therapy, different biologics and JAK [Janus kinase] inhibitors, and to subsequently determine which option best fits with each patient’s values and goals at the point of care is challenging. Consequently, patients are rarely effectively engaged in the decision-making process,” wrote Liana Fraenkel, MD, MPH, Professor of Medicine (Rheumatology), Yale School of Medicine, New Haven, CT, and colleagues.

To address the hurdle of therapy selection and facilitate shared decision-making between patients and their rheumatologists at the point of care, Dr Fraenkel and colleagues narrowed down a selection of preference phenotypes that could be used to enhance communication and treatment decision-making.

Dr Fraenkel and colleagues invited volunteers who met the study’s eligibility criteria, which included residing in the United States or Puerto Rico, having physician-diagnosed RA, and current treatment with ≥1 disease-modifying antirheumatic drugs and/or a biologic or JAK inhibitor, to participate in the study. Participants were recruited from both CreakyJoints, an online arthritis patient community of more than 100,000, and its related research registry, Arthritis Power, which currently includes more than 12,000 consented members.

Eligible participants were sent unique links to a conjoint analysis survey that measured patient preferences for triple therapy, biologics, and JAK inhibitors. The survey, which was completed by 1273 patients, was crafted to help patients distinguish between these therapeutic options, and comprised 7 treatment-related characteristics. Dr Fraenkel and colleagues narrowed these characteristics down to 5 phenotypes based on the progressively lower values of the Akaike and Bayesian information criteria—bothersome side effects (group 1), rare side effects (group 2), cost (group 3), administration (group 4), and onset and infection (group 5).

Survey results indicated that treatment cost (group 3, 38.4%) was the biggest factor influencing patients’ decision-making, despite the study population being mostly insured.

“Concerns over deductibles and expectations related to future cost increases are pervasive among patients with RA. The importance attributed to cost highlights the need for rheumatologists to present comparative cost data to patients when discussing therapeutic alternatives,” Dr Fraenkel and colleagues wrote.

The possibility of bothersome side effects was a prevalent decision-making factor for 25.8% of patients (group 1), just as the risk for very rare side effects was for 11.2% of patients (group 2), and the onset of action and risk for serious infections influenced the treatment-related decisions of 18.0% of patients (group 5).

Route of administration was a contributing factor in the decision-making of 6.6% of patients (group 4), who preferred oral medications over parenteral drugs. Triple therapy was the preferred treatment option for the majority of patients in groups 2, 3, and 4, whereas subcutaneous tumor necrosis factor inhibitors were preferred among those in groups 1 and 5.

In an interview with Value-Based Care in Rheumatology, Dr Fraenkel explained the need for an efficient, personalized approach to shared decision-making that addresses patient-specific concerns.

“It is very difficult for physicians to describe in detail the numerous treatment options available to patients with RA, so we sought to develop a different framework they could use to engage patients in the decision-making process. We hypothesized that it would be helpful to present patients with a spectrum of patient preferences to clarify their own concerns and preferences,” she said.

The investigators also assessed the feasibility of implementing a decision tool that incorporates phenotypes at the point of care, and findings from this study will be available in the near future.

Using Preference Phenotypes to Enhance Communication, Facilitate Treatment Decision-Making, and Personalize Care

W. Benjamin Nowell, PhD, Director of Patient-Centered Research at CreakyJoints and co-investigator of the study, emphasized the importance of identifying and removing barriers that can interfere with time-sensitive decisions that are crucial to the effective management of patients with RA.

“Unfortunately, a lot of patients with RA are not managed as well as they could be, despite the availability of numerous effective treatments. One of the obstacles that can stand in the way of making important decisions is fear and confusion. It is easy for patients to become overwhelmed when they have to make a decision related to their next step of treatment. I think a decision-making tool such as the one we recently evaluated will allow the physician and the patient to have a shared vocabulary when discussing treatment options, which can address some of these barriers,” he explained.

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Last modified: May 4, 2018
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