Mithu Maheswaranathan, MD: Impact of Health Literacy in Clinical and Patient-Reported Outcomes in SLE

Rheumatology Network interviewed Mithu Maheswaranathan, MD, on his ACR presentation, “Association of Limited Health Literacy with Clinical and Patient-Reported Outcomes in Systemic Lupus Erythematosus: An Analysis from the Peer Approaches to Lupus Self-Management (PALS) Program.” Maheswaranathan is a Rheumatology Fellow at Duke University.

Rheumatology Network: Can you tell me a bit about health literacy and why it's so crucial for patients with rheumatic disease?

Mithu Maheswaranathan, MD: Health literacy is an important social determinant of health. And it's defined as the capacity for individuals to obtain, process, communicate, and understand basic health information needed to make decisions about their health. For example, adequate health literacy is needed to complete tasks like reading and comprehending prescription dosages, understanding health materials or doctor instructions, navigating the insurance and health systems, and managing medications. In rheumatology, our diseases are inherently complex, many with multi-system organ manifestations and difficult to manage medication regimens. And health literacy is crucial for patients with rheumatic disease. For instance, it can impact someone's ability to draw the correct amount of medication for subcutaneous methotrexate injection, understand the consequences of non-adherence, such as potential dialysis in uncontrolled lupus nephritis, and managing medication regimens where we're often up titrating immunosuppressants while simultaneously tapering high dose steroids at disease onset. Low health literacy is associated with worse clinical outcomes, like increased hospitalizations, higher readmission rates, greater use of emergency care, and lower medication adherence. In chronic diseases, it's an important element to address to ultimately hopefully help improve health outcomes.

RN: What was the study design and the methods your team used to determine the association of health literacy with clinical and patient-reported outcomes?

MM: This study used observational and cross-sectional data obtained as part of the Peer Approaches to Lupus Self-Management, or PALS, study, which was an NIH-funded randomized control trial evaluating a peer mentorship program for African American women with lupus. And the trial examined whether this peer mentoring intervention could improve disease, self-management of disease activity, and health-related quality of life in Black women with lupus. As part of enrollment into this study and ongoing follow up, participants completed various health assessments, including health literacy. We were interested to evaluate the associations with limited health literacy in this population. We used some descriptive statistics and other statistical analyses to basically compare the association of limited health literacy with these various clinical factors, including some patient-reported outcomes, and then specifically disease activity as well as damage for some of the other clinical outcomes.

RN: And what were your key findings?

MM: We found patients with limited health literacy had worse patient-reported outcomes as well as clinical outcomes across multiple domains, including lower self-efficacy and worse patient activation, increased rates of depression and anxiety, as well as higher disease activity and lupus damage compared with those that had adequate health literacy.

RN: Were you surprised by these results?

MM: We knew from some previous work that lupus patients with limited health literacy have worse patient-reported outcomes. However, this study allowed greater insight into what some of the specific factors are that are impacted by limited health literacy. We were surprised at which areas seem to be impacting our patients with limited health literacy related to disease understanding. For example, there were not statistically significant differences between the limited health literacy versus adequate health literacy group for questions on the patient activation measure (PAM) that were related to knowing what prescribed medications do and have confidence to tell their doctor their concerns. However, what was striking was on the problems related to physician patient communication reported in the patient centered care survey. In that survey, those with limited health literacy were more likely to report difficulty in getting answers to their questions that were understandable, having their physician take enough time to answer their questions, and getting as much medical information as they wanted from their physician compared to those without adequate health literacy. These results highlighted a need for rheumatologists to be better informed about ways that we communicate with our patients. Using language that they can understand and spending time to address their questions may be an important element in in terms of things that we can do to improve health literacy.

RN: Were there any strengths or limitations of the study that you would like to highlight?

MM: Our study did include a large cohort of Black women living with lupus and offered insight into this unique patient population with respect to health literacy, a topic that's been under-studied in lupus compared to other chronic diseases. Because various measures were obtained at baseline enrollment and followed up into the PAL study, we were able to analyze the association of many clinical factors with limited health literacy that have not yet been explored in that kind of causal pathway between health literacy and adverse health outcomes. one limitation was that the patient's all self-identified as Black race. So, we don't know whether these results would be generalizable to other groups and patient populations.

RN: Is there anything else that you would like our audience to know before we wrap up?

MM: I do want to thank Dr Edith Williams, who was the PI on the PAL study for the collaboration. And if anyone has any questions, feel free to reach out to me on Twitter @MithuRheum.