Patients with RA and their clinicians approach treatment goals differently based on knowledge, illness experience, and competing priorities, according to findings from a qualitative study.

The results of this study underscore “the tension between having an explicit shared goal between clinicians and patients, and experiencing inherently different – and at times opposing – conceptualization of how one formulates or achieves said goal,” wrote Jennifer L. Barton, MD, of the Department of Veteran Affairs Portland Health Care System and Oregon Health & Science University, Portland, and her coauthors.

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The researchers recruited 19 RA patients with a mean age of 55 years and 18 clinicians (8 rheumatology fellows and 10 attending rheumatologists) from clinics in San Francisco and Portland to participate in one of eight focus groups. The focus groups used a standardized interview guide to cover five topic areas: self-introductions; hopes, expectations, or goals for treatment; communication of expectations in clinical visits; feasibility; and acceptability of technology to facilitate goals. Patients and clinicians were assigned to separate focus groups.

Two domains – disease knowledge and psychosocial dynamics – emerged across all focus groups, Dr. Barton and her colleagues reported in Arthritis Care & Research.

Disease knowledge and education

In the knowledge domain, themes that emerged were informed choice, medication adherence and safety, and clinician assumption of patients’ inability to interpret information. Patients disclosed, for instance, a desire for more information on disease progression and medication side effects to inform future clinician visits, and often sought such information on the Internet.

“Patients highlighted the importance of RA knowledge to understanding what was happening to them physically and the impact of medication on their bodies, and their need to seek information outside of the clinical visit,” the authors noted.

Whereas patients discussed medications in the context of informed decision making, “many clinicians connected RA education to risk of nonadherence and medication safety,” the authors reported. Additionally, “patients did not discuss their adherence to clinician treatment recommendations, though patients expressed dissatisfaction with clinicians who they believed dismissed their medication concerns.”

Some clinicians expressed frustration with patients’ self-education efforts and attitudes toward alternative medicine, and patients reported feeling as though doctors had “diminished the importance of information” they shared.

“Several clinicians voiced perceived paradoxes in current expectations of their professional role as an expert who also defers to patient preferences,” the authors said. “Many clinicians voiced frustration with patients seeking knowledge from what they considered unreliable sources, which prompted varying levels of comfort among clinicians with some adopting a more paternalistic stance.”

Psychosocial dynamics of RA illness

The psychosocial dynamics domain focused on stress and found that patients’ experiences with RA informed their treatment preferences and affected patient-provider communication. For instance, patients who experienced inability to participate in activities because of pain or fatigue prioritized treatment goals aimed at pain reduction and increased energy, with minimal side effects.

“In contrast, clinicians talked about using objective clinical markers” to inform treatment strategy, the authors said. Although they acknowledged the psychosocial stress experienced by patients, clinicians cited limited time and resources as a main reason for their inability to adequately address these concerns.

Both patients and clinicians acknowledged the role of fear in the disease experience, with providers asserting that patients’ fear “disrupted effective communication and complicated patient willingness to follow treatment recommendations,” the authors said.

Lastly, both patients and clinicians described treatment decisions as a “negotiation” in which patients’ priorities of quality of life improvements, such as pain reduction, often were at odds with objective clinical goals of the provider, such as addressing underlying damage.

“Patients indicated that clinician goals focused on objective clinical markers and helping patients achieve remission; however, patients expressed a desire for clinicians to look beyond clinical markers and consider patients’ quality of life goals as well as being open to multiple treatment possibilities,” the authors said.

Areas for improvement

The results of the study highlight potential areas for improvement in patient-clinician communication, namely by balancing the imparting of clinician knowledge with sincere consideration of patient preferences and priorities. “The mismatch in attitudes towards the goal of knowledge between patients and clinicians may lead to suboptimal communication and lack of trust,” the authors wrote. “Patients’ desire for information on a range of RA topics is important, but the value attached to that knowledge is where patients and clinicians diverge.”

Resources aimed at facilitating a conversation around goals may lead to greater goal concordance, which could potentially result in more high value treatment, the authors concluded. “With tools and training to support patient goal-directed care in rheumatology, improved outcomes and reduced disparities may be achieved.”

The study was funded by a grant to Dr. Barton from the National Institutes of Health.

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SOURCE: Barton JL et al. Arthritis Care Res. 2018 Feb 13. doi: 10.1002/acr.23541.

Treatment priorities often differ between RA patients, clinicians