SAN DIEGO—A trusting relationship between patients and their rheumatology providers is not automatic and requires conscious effort on the part of physicians. After trust is established, the relationship can have real effects on health outcomes, panelists said in a session at ACR Convergence 2023.
The session addressed what is at stake when trust may be lost or never gained, as well as challenges to bolster the attention that is given to the entire panoply of a patient’s symptoms.
Be Trustworthy
Joy Buie, PhD, MSCR, RN, vice president of research at the Lupus Foundation of America, said there were many reasons for patients—particularly in racial and ethnic minoritized communities—to distrust the medical system. Historical examples of situations that created the persistent mistrust of the medical community include the Tuskegee syphilis study in which 600 Black men were not informed of the study’s nature and 400 men with syphilis were not treated despite the availability of a proven treatment and the harvesting of cancer cells from Henrietta Lacks without her knowledge or consent to create a cell line for medical research.1,2
Dr. Buie suggested that it’s ineffective, and even unethical, to ask a patient whose ancestors may have experienced discriminatory and unethical practices to trust a medical system that has been historically untrustworthy. “Perhaps it’s not on the part of the patient to trust the provider,” Dr. Buie said. “Perhaps it’s on the part of the provider, as well as the healthcare system, to be trustworthy. It is only fair for the patient to look for convincing evidence and use their data to make a decision about whether a system or provider is, indeed, trustworthy.”
Several studies suggest that building trust involves factors that sound basic but can be overlooked in practice, Dr. Buie noted. They include honesty, the quality of a provider’s communication, the confidence they cultivate in their decision-making, respecting confidentiality and performing with a high level of competence.3
“This [approach] will ultimately require a shift in how providers and researchers consider trust, such that patient and community perspectives on trustworthiness of the medical enterprise are much more central,” Dr. Buie said.
Beyond Numbers
Lisa Sammaritano, MD, a rheumatologist at the Hospital for Special Surgery, New York, and professor of clinical medicine at Weill Cornell Medicine, New York, said that physicians need to think about more than numerical disease parameters when caring for patients.
“Patients don’t think about their [Systemic Lupus Erythematosus Disease Activity Index] score, they think about how they feel, and they think about what they can do,” she said.
Cognitive difficulties, depression, pain and fatigue can all have a huge effect on quality of life. Non-pharmacological therapies may be just as important as medications for managing these symptoms, she said.
Symptoms that can affect quality of life are often multifactorial. Example: A 2021 review on fatigue in lupus found that an array of factors contributed to quality of life—obesity, depression, vitamin D deficiency, etc. Disease activity was one contributor. The authors’ suggested using a validated instrument—such as Patient-Reported Outcomes Measurement Information System or another patient-reported outcome measure—and then do a personalized investigation to identify these factors for a particular patient. The goal is for clinicians to proceed with interventions that fit that patient’s profile.4
At Duke, researchers introduced a new way of categorizing lupus symptoms in an attempt to acknowledge that symptoms can arise from different sources. One type of lupus, under this categorization system, is the more active inflammatory type involving synovitis, rash and other symptoms and another involves such symptoms as fatigue, myalgia and mood disturbance. Treatment that helps with the first type of lupus may not help with the second type, Dr. Sammaritano said.5
“Their motivation in doing this [study] was to actually improve physician-patient communication because it’s important for physicians and patients to understand what’s going on and maybe to think about what might be causing the symptoms,” Dr. Sammaritano said. “Therapies may differ.”
Connect with Patients
Monique Gore-Massy, who has lupus and is an advocate for lupus awareness, issued a challenge to clinicians to do a better job of connecting with their patients.
“We need to recognize that our patients have been through something” even if they may not appear to be sick, she said. “We need to hear them; we need to acknowledge all of their journey.”
Ms. Gore-Massy emphasized the need for clinicians to use person first language, in which people remain people rather than become subjects. The disease is just “what the person has” and not “what the person is,” she noted.
Providers may be connecting less with patients than they realize. “Consider [the] emotional ignorance that you might have as a practitioner, as a researcher,” Ms. Gore-Massy said. “Are you lacking empathy, compassion and understanding? And do your patients feel like their whole authentic selves [while] in your care?”
Although cultural competence is helpful, she said—“it’s a start”—providers should make an effort to move to cultural humility. Cultural humility is when providers don’t just acknowledge cultural perspectives different from their own, but also acknowledge the privilege they have and reflect on how they approach patient care. Similarly, health literacy should be bi-directional—not just a matter of patients learning about their conditions and symptoms, but one of providers also understanding their patients.
Ms. Gore-Massy addressed the concern that diversity, equity and inclusion has become a “boogeyman,” with some seeming to think that no further progress can be made in this area. That perception is a mistake, she said.
“We do not want to bench diversity, equity and inclusion,” Ms. Gore-Massy said. “We need everyone to become very persistent in understanding that health disparities are still very pervasive.”
Thomas Collins is a freelance medical writer based in Florida.
Reference
- Online study guide: Chronology of cases involving unethical treatment of human subjects. University of New Hampshire. 2024.
- Baptiste DL, Caviness‐Ashe N, Josiah N, et al. Henrietta Lacks and America’s dark history of research involving African Americans. Nurs Open. 2022 Sep; 9(5): 2236–2238.
- Wilkins CH. Effective engagement requires trust and being trustworthy. Med Care. 2018 Oct; 56(10 suppl 1):S6–S8.
- Kawka L, Schlencker A, Mertz P, et al. Fatigue in systemic lupus erythematosus: An update on its impact, determinants and therapeutic management. J Clin Med. 2021 Sep 3;10(17):3996.
- Pisetsky DS, Clowse MEB, Criscione‐Schreiber LG, Roger JL. A novel system to categorize the symptoms of systemic lupus erythematosus. Arthritis Care Res. 2019 Jun;71(6):735–741.
