Rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) are chronic immune-mediated inflammatory diseases (IMID) that are often complicated by decreased health-related quality of life, even among individuals receiving the latest guideline-directed treatments. For example, despite the advent of biologic disease modifying antirheumatic drugs (DMARDs) for the treatment of RA¹, fewer than ten percent of affected individuals achieve sustained disease remission, and a significant proportion continue to experience pain, functional disability, and fatigue^2,3. Similarly, people with SLE experience major unmet needs related to the treatment of pain and fatigue, and over half of affected individuals report chronic uncontrolled symptoms despite immunosuppressive treatment⁴. Further, adverse drug events from DMARDs are common ⁵, and many people with RA and SLE report a preference for non-pharmacologic treatments to reduce symptom burden^6,7. The high prevalence of persistent symptoms despite pharmacologic treatment coupled with the significant incidence of medication side effects points to an important need for adjuvant nonpharmacologic treatment approaches in the management of these diseases.

Lifestyle medicine (LM) and complementary and integrative health (CIH) represent overlapping medical specialties that provide opportunities to mitigate disease related symptoms in people living with chronic rheumatic conditions. The American College of Lifestyle Medicine defines LM as “the evidence-based practice of engaging individuals and communities with 6 pillars of comprehensive lifestyle change that include healthy eating, physical activity, stress reduction, restorative sleep, positive social connections, and avoiding risky substances”⁸. CIH combines complementary evidence-based approaches such as natural products, mind-body medicine, and acupuncture with conventional medical approaches to treat disease and promote health.

Though prior studies have demonstrated beneficial effects of dietary modification^9,10, physical activity^11–16, omega-3 supplementation^17,18, and combined lifestyle interventions¹⁹ in RA and SLE, no recent studies have focused on the practical use of LM and CIH approaches among individuals with these diseases, or patient perspectives on these adjunctive treatment strategies. More research is needed to understand patient experiences with LM and CIH to inform patient-centered care that maximally aligns with patients’ preferences and needs. The objective of this qualitative study was to explore a) use of LM and CIH treatment modalities among patients with RA and SLE; b) patient perceived efficacy of those modalities; and c) barriers to implementing lifestyle and CIH approaches in these populations.

Thirty-nine participants who spoke either English or Spanish and had a diagnosis of either RA or SLE participated in this study (Table 1). Data characteristics from each focus group are summarized in Table 2. Participants described their experiences using lifestyle and complementary treatment modalities to manage their rheumatic symptoms with n=130 total mentions of their experiences across focus groups (Table 3).

This is the first study to investigate the patient experience with, and demand for, LM and CIH among a multilingual sample of individuals living with RA and SLE. Among LM modalities, participants were the most interested in diet and generally agreed that dietary content associated with the severity of joint symptoms, though the specific food ingredients that exacerbated symptoms varied across individuals. Among the CIH modalities, participants reported the most experience with TCM and natural products, expressed a strong interest in trying additional complementary treatment strategies, and described a need for more information on safely combining natural products or herbs with their prescribed medications. Participants also described the significant emotional and psychological impact of living with a rheumatic disease with many reporting the use of mind-body-medicine to cope.

Our study builds on a growing body of literature addressing the impact of diet in people with rheumatic diseases by adding patient’s lived experience of the effect of dietary change on inflammatory symptoms. Notably, regardless of language (English or Spanish) or rheumatic disease (RA or SLE), most participants in our study perceived an association between the content of their diet and their rheumatic disease symptoms. Additionally, most participants agreed that alcohol, sugar, and red meat associated with more joint pain and swelling, and that a Mediterranean or plant-based diet improved their symptoms. Congruent with these findings, in a study that evaluated dietary changes and patient-perceived lupus symptoms, Knippenberg and colleagues found that participants who changed to healthier eating patterns with more vegetables and less processed food experienced improvements in musculoskeletal symptoms, mood, and fatigue³⁰. Given the perceived association between diet and disease-related symptoms among patients with RA and SLE in our study and others^30–32, more research is needed to define the optimal diet(s) for individuals with these conditions.

An important theme throughout the focus groups was the significant psychological toll of living with a rheumatic disease, and though this phenomenon has been documented in prior epidemiologic studies, few studies have examined the lived experience of unmet psychological needs in RA and SLE^33–36. Across all five focus groups—but particularly during the Spanish-speaking RA group—participants discussed the detrimental effects of their disease on their physical function, social connections, performance at work (especially for those who worked in physically demanding occupations), and the ability to care for themselves. For some, these challenges had created a vicious cycle of stress leading to poor sleep, which in turn exacerbated their pain and fatigue, ultimately causing more stress. Many participants had taken medications for emotional distress but preferred to improve their mental health through other means, leading them to try a variety of complementary modalities such as meditation, prayer, emotional freedom technique, and psychedelics. The nearly universally shared experience of disease-related stress among participants in our study points to the critical need for further research on non-pharmacologic strategies—for example, mindfulness-based interventions, which have shown benefit in other chronic conditions complicated by pain and fatigue^37–40—to address the emotional and psychological impact of living with RA and SLE.

An unexpected emergent theme was the therapeutic effect of sharing experiences through storytelling. Because RA and SLE each affect less than 1% of the population, many participants did not know another person with their diagnosis and expressed feeling socially isolated. However, during the focus groups, participants shared personal and compelling stories of challenges, fears, and victories in their lives. In particular, the Spanish-speaking RA participants created an intimate environment in which they shared one moving story after another about the professional, social, and domestic challenges they faced, as well as practical advice for navigating those challenges. This desire to share stories and learn from others with similar health challenges was also observed in a qualitative RA study by des Bordes et al. where they found that participants needed more peer support and preferred support from friends with a similar disease experience over non-sick close relatives³¹. Similarly, in their qualitative study about self-management during RA flares, Kett et al. found that RA patients who had experienced a recent flare wished they had been in contact with other RA patients during the flare to receive guidance from an individual or group who had been in their position⁴¹. Taken together, these studies underscore the critical need for mechanisms to create and sustain community among individuals living with complex chronic illnesses both to mitigate social isolation and to support crowdsourcing of valuable information about disease management.

This study has limitations. Because we were interested in learning about patients’ experience with several lifestyle and CIH modalities, focus groups covered several treatment modalities, precluding the opportunity for in-depth discussions about each modality or an exploration of potential reasons for positive versus negative experiences with specific CIH modalities across participants. The focus groups were conducted virtually using an online video conference platform, which may have deterred participation from individuals with lower technological literacy. However, we worked to mitigate this risk by providing one-on-one instruction on use of the platform with language-concordant study staff to any participant who was Zoom naïve. The study recruited individuals residing in the San Francisco Bay Area, and thus the perspectives and experiences expressed by participants in our study may not represent individuals’ experiences with RA and SLE in other geographic regions. Additionally, though participants were not recruited from clinics that offer CIH treatments, it is possible that individuals willing to participate in a study about CIH and LM are biased toward greater interest in nonpharmacologic adjunctive treatments compared to individuals who declined to participate. Finally, the study may have been strengthened by including patient partners in the study design and interpretation of findings. Study limitations are offset by several important strengths including recruitment from multiple different healthcare settings (a university hospital, safety net hospital, and community clinic), inclusion of a diverse and multilingual study sample, a robust sample size relative to similar prior qualitative studies, and a rigorous analytical approach.

This study highlights several important future directions. The unmet information needs related to nonpharmacologic adjunctive treatments described by participants in this study reflects the overall low level of evidence at the intersection of rheumatology, integrative health, and lifestyle medicine¹¹. Many of the questions raised by focus group participants do not have evidence-based answers and underscore the need for adequately powered randomized controlled trials to determine whether popular CIH modalities (e.g. dietary modification, acupuncture, and natural products) improve disease activity and symptom burden in RA and SLE. Additional future directions include a follow-up study to identify underlying attitudes, beliefs, and cultural differences that influence patient experiences with LM and CIH, as well as research to identify patient factors that predict response versus nonresponse to acupuncture among this patient population.

In conclusion, among a racially and socioeconomically diverse sample of individuals with RA and SLE, we found a strong desire for lifestyle and complementary approaches to augment pharmacologic management of their conditions. We also identified major unmet information needs related to medication/supplement interactions, safe physical activities in the context of inflammatory arthritis, nonpharmacologic strategies for stress management, and optimal dietary choices. These unmet needs call for an interdisciplinary model of rheumatic disease care—one in which rheumatologists work alongside nutritionists, physical therapist, and psychologists—and highlight the critical importance of future research at the intersection of integrative health and rheumatology.