Patient and physician perspectives of systemic lupus erythematosus flare: A qualitative study

Abstract

Objective:

Systemic lupus erythematosus (SLE) flares are associated with increased damage and decreased health-related quality of life. We hypothesized there is discordance between physicians’ and patients’ views of lupus flare. In this study, we aimed to explore patient and physician descriptions of SLE flares.

Methods:

We conducted a qualitative descriptive study using in-depth interviews with a purposeful sample of patients with SLE (1997 ACR or SLICC criteria) and practicing rheumatologists. Interviews were audio-recorded, transcribed, and analyzed using applied thematic analysis.

Results:

Forty-two patient participants living with SLE, representing a range of lupus activity, completed interviews. The majority described flare symptoms as joint pain, fatigue, and skin issues lasting several days. Few included objective signs or laboratory measures, when available, as features of flare.

We interviewed 13 rheumatologists from 10 academic and 3 community settings. The overwhelming majority defined flare as increased or worsening lupus disease activity with slightly more than half requiring objective findings. Around half of the rheumatologists included fatigue, pain or other patient-reported symptoms.

Conclusion:

Patients and physicians described flare differently. Participants with SLE perceive flares as several days of fatigue, pain, and features. Providers define flares as periods of increased clinical SLE activity. Our findings suggest the current definition of flare may be insufficient to integrate both perceptions. Further study is needed to understand the pathophysiology of patient flares and the best way to incorporate patients’ perspectives into clinical assessments.

Introduction:

Systemic lupus erythematosus (SLE or lupus) is an autoimmune disease characterized by immunological disturbances in association with diverse clinical manifestations. Despite heterogeneity of disease, a characteristic feature of SLE is periodic flares with increased disease activity. Flares in the medical community are considered periods of more intense inflammatory manifestations and may occur at unpredictable times; medical non-adherence may also lead to flares. As shown in many studies, flares are associated with increased end organ damage, poor outcomes, increased cost, and decreased health-related quality of life.^1–5 While defining, measuring, and managing flares is key for improving outcomes, it can be challenging given the variety of lupus manifestations, the numerous factors associated with flares, and the lack of reliable biomarkers. Moreover, the well-described discordance between patient and physician views of lupus activity may translate into different ideas on the nature of flares and therefore the frequency of their occurrence.^6–10

At present, many definitions of flare and flare indices have been proposed to capture disease exacerbations.^10–14 Some of these definitions are anchored on the provider’s intention for treatment while others include cut-points on standard measures of lupus disease activity.^15,16 A flare definition proposed by Petri et al. includes the dimension of time and the concept of the rate of change as key components for distinguishing flare from gradual progression of disease.¹⁷ In 2010, the Lupus Foundation of American (LFA) and Pediatric Rheumatology International Trials Organization (PRINTO) organized a working group of 120 physicians to establish a consensus definition of lupus flare. Using the Delphi technique, the consensus defined flare as the following: “A measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or laboratory measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or increase in treatment.”¹⁸

In our work, we have proposed a new model for categorizing symptoms of SLE: the Type 1 & 2 SLE Model. Type 1 manifestations include signs and symptoms such as arthritis, rash, and proteinuria; these manifestations can be objectively measured and represent evidence of inflammatory disease activity. In contrast, Type 2 manifestations include pain, fatigue, depression and “brain fog”; the relationship of these symptoms to inflammation is less clear as these symptoms are often multifactorial.¹⁹ Type 2 manifestations are usually not included in measures of disease activity such the SLEDAI, although in our studies, Type 2 activity can be assessed by patient-reported instruments such as the Polysymptomatic Distress Scale (PSD), PROMIS-29, or SF-36.^20–25 Of note, symptoms such as pain, fatigue and brain fog are not included in physician definitions of disease activity or flare; patient experience has usually not informed the proposed definition of flare nor the basis for its assessment. In our initial study examining the prevalence of Type 1 and Type 2 SLE manifestations, we found that patients with high Type 2 SLE activity reported a significant frequency of flares of moderate to severe intensity²⁴ regardless of associated Type 1 activity; these findings suggest that many patients view Type 2 symptoms, including fatigue and widespread pain, as features of lupus flare.

The rheumatology field is moving toward a wider use of patient-reported outcome (PRO) measures and quality of life (QoL) measures in both clinical practice and clinical trials. In this study, we sought to assess the view of patients with SLE, as well as practicing rheumatologists, on the nature and definition of flare.

Methods:

Recruitment and Selection of Participants:

Adult patients with SLE were identified from the Duke Lupus Registry (DLR; IRB# Pro00008875) meeting American College of Rheumatology (ACR) or Systemic Lupus International Collaborating Clinics (SLICC) classification criteria after reviewing the medical records and data in the DLR.^10,26 This study was approved by the Duke Health IRB (Pro00102300, Pro00103335). We used stratified purposeful sampling to identify potential patient participants, as previously described, to include a range of SLE manifestations, Type 1 and Type 2 SLE activity, and demographic diversity selected for age, race, sex and history of nephritis.²⁷

Patients were sampled on four SLE activity groups based on visits from the preceding ~1 year:

• Predominately Type 1 SLE: Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) score ≥6 without high Type 2 activity²⁸

• Predominately Type 2 SLE: Polysymptomatic Distress (PSD) score ≥12 without high Type 1 activity²⁹

• Mixed SLE: Meeting criteria for both high Type 1 and Type 2 at any time during the preceding year

• Minimal SLE: Clinical SLEDAI (scored without labs) of 0, no SLEDAI nephritis, PSD <3 at all visits in the preceding year

Prior to enrollment, a patient’s activity group was confirmed by the treating rheumatologist following a review of the patient’s physician assessment scores, medications, and hospitalizations over the prior year.

We planned to conduct 12 interviews with each patient group based on previous research that demonstrated when thematic saturation can be satisfied.³⁰ Thematic saturation was met after conducting 5 interviews from Minimal SLE patients as interviewers were gathering redundant information.

Practicing rheumatologists from the United States and Canada who are members of the American College of Rheumatology or who participated in the 2019 International Congress of SLE in San Francisco, California were invited to participate in qualitative interviews. Rheumatologists were purposefully selected to include a range of private practice clinicians, academic rheumatologists and academic SLE researchers as well as a diverse mix of age, race, gender, and years of clinical practice. Our sample size was based on ensuring that a range of rheumatologists were interviewed.

Data Collection:

Two trained interviewers completed the patient interviews from September 2019 to April 2021. The interviews lasted on average 45 minutes and were conducted on the telephone (n=40) or in-person (n=2). Physician interviews were conducted from October 2020 to December 2020 by two trained interviewers on video (n=13), and lasted, on average, 60 minutes. Interviewers obtained verbal informed consent from all participants prior to the interview. Interviews were audio-recorded with an encrypted recorder and transcribed verbatim by GMR Transcription, with the exception of one provider who declined to be recorded. The authors created open-ended, semi-structured interview guides for patients and physicians. Both patients and physician participants were asked to describe what a lupus flare means to them. Patients were probed as to the length of flare, triggers for flare and how they manage lupus flares; physicians were probed about treatment approaches for Type 2 symptoms.

Analysis:

Applied thematic analysis³¹ was used to explore patient and physician descriptions of lupus flare. Analysts first applied structural codes to transcript text to organize comparable responses together. Emerging concepts within each structural code were then identified and recorded as content codes.³¹ Analysts discussed, resolved, and amended any inconsistencies or differences in coding. Content code frequency tables were generated to identify the most common and notable themes. Subtleties and sub-themes were described and evaluated using data reduction techniques. Analytical summary reports were created including themes, sub-themes, and illustrative quotes. During analysis, participants’ descriptions of their flare symptoms were summarized using the corresponding medical terms.

Results:

Patient Perspective:

In-depth patient interviews were conducted with 42 patients with SLE (12 participants from the Type 1 group, 12 participants from the Type 2 group, 13 participants from the Mixed group, and 5 participants from the Minimal group); 93% were female, 52% self-identified as non-Hispanic Black, and the mean age was 45. Over half of participants were college educated and just under half of participants had Medicare, Medicaid, or no health insurance. All participants with SLE met 1997 ACR or 2012 SLICC classification criteria with 95% being ANA positive; one participant was ANA negative but dsDNA positive and another participant had a low-level ANA tier of 1:40. The mean length of disease of the cohort was 15 years (range: 7 months to 37 years). The most common clinical SLE manifestations included mucocutaneous and inflammatory arthritis involvement affecting 93% and 81% of patients respectively, while 36% of participants had historical or active lupus nephritis (Table 1).

Table 1.

Participant characteristics.

	Overall
	n = 42
Demographics
Age, years (mean, SD)	45 (14.5)
Disease duration, years (mean, SD)	14.5 (9.5)
Female	39 (93%)
Race/ethnicity
Non-Hispanic Black	22 (52%)
Non-Hispanic White	15 (36%)
Hispanic	2 (5%)
Asian	2 (5%)
Mixed race	1 (2%)
College education	22 (52%)
Medicare/Medicaid/No insurance	20 (48%)
Married or living with partner	21 (50%)
Number of individuals can count on for help or support	3.5 (1.9%)
Serologies
ANA positive	40 (95%)a,b
Anti-dsDNA antibody OR Anti-Smith antibody positive	28 (67%)
Low C3 and/or low C4	24 (57%)
SLE Diagnostic Criteria
1997 ACR Criteria Metc	40 (95%)
SLICC Criteria Metc	40 (95%)
Historical SLE Manifestations
Arthritis/Joint involvement	34 (81%)
Mucocutaneous	39 (93%)
Renal	15 (36%)
Serosal	8 (19%)
Hematologic	24 (57%)
Patient-Reported Historical Medication Use
Hydroxychloroquine	41 (98%)
Oral prednisone	39 (93%)
Azathioprine	20 (48%)
Methotrexate	20 (48%)
Mycophenolate mofetil	19 (45%)
Mycophenolic acid	7 (17%)
Cyclophosphamide	7 (17%)
Belimumab	6 (14%)
Rituximab	5 (12%)

^aone participant is ANA negative but dsDNA positive

^bone participant ANA 1:40

^cn=2 participants met 1997 ACR criteria but not SLICC criteria and n=2 participants met SLICC criteria but not 1997 ACR criteria(28-29)

Patient Perspective of Flare:

The majority of patient participants with SLE described their flare symptoms as joint pain, fatigue, and skin symptoms, including rashes, skin spots, and discoid lupus. They also commonly reported other flare symptoms including swelling, myalgia, mood disturbance and a prodrome of flu-like symptoms (Table 3; Table 4). Several participants noted brain fog, diffuse pain, and weakness as prominent flare symptoms. One participant with SLE described flares as, “I don’t know I’m in a lupus flare until I can’t function. I’d be thinking I’m just exhausted. I start the itching and being depressed, crying. I can’t move… When people talk to me, I’m incoherent. I’m in pain.” Less commonly, patients described oral ulcers, loss of appetite, chest pain, headaches, and changes in body temperature. A few participants also mentioned hair loss, heaviness, insomnia, and light sensitivity as flare. Only one participant with SLE included nephritis, and one participant noted lab abnormalities as signs of flare.

Table 3.

Patients’ perspectives on SLE flares.

Symptoms	A lupus flare to me means having that rash come up again, having abnormal bloodwork, seeing that blood or orange tinge to my urine again, even when I’m drinking tons of water, having that chest pain again, kinda feeling that tiredness again, and the widespread pain, or even pain in my joints. And usually, if I’m feeling that tiredness. (34yo female with Mixed SLE)
	I don’t know I’m in a lupus flare until I can’t function. I’d be thinking I’m just exhausted. I start the itching and being depressed, crying. I can’t move. I’m trying to move from point A to point B, and I can’t get there. It takes me longer. When people talk to me, I’m incoherent. I’m in pain. It’s like my whole body goes into a tailspin. (59yo female with Type 2 SLE)
Duration	There are milder ones like where I just have the rash and maybe some chest pain, but not the fluid around the heart or lungs, or just mild stuff like brain fog, chest pain maybe, and fatigue and lack of appetite. Those are shorter than those that I have like pericarditis or pleurisy. Usually the ones with pleurisy last, or pericarditis, last longer (48yo female with Mixed SLE)
	They can last anywhere from a day to a week, depending on whether or not you believe what’s causing them. (49yo female with Type 2 SLE)
Triggers	Well, I just think the regular stressors that everybody goes through in life can definitely flare up your lupus. You have to be really careful not to overextend yourself, not to make too many commitments. I think if you’re working, job stress can definitely contribute to a flare-up. (46yo female with Type 1 SLE)
	Once I became a military spouse, I think my anxiety hit to a new level because the constant moving, having to find new doctors, having to find a new job, learning a brand new area, the fear of the unknown, walking into new territory, not knowing anyone, not having any friends or anything. (32yo female with Type 1 SLE)
Management	To manage the flares, I’ll usually call the doctor, let them know the symptoms that I’m feeling. If it’s – I have prednisone at the house… And if they suggest it.. prednisone in a pack at the pharmacy for me, just in case I need that extra boost to help with the joint pain. So, I’ll wait for whatever prescription that they give me. And I’d get some rest, if it’s at all possible for me to do that. And they usually send me to get bloodwork done. (34 yo female with Mixed SLE)
	I generally try to get more sleep. […] I would make sure that I eat very, very clean and very healthy better than flare ups. I will try to just rest as much as possible. Catnap anything go to bed earlier. I know some suggest taking a walk and doing something somewhat active. But in my experience with my really bad flare ups, that just making things even more miserable for myself. (23yo male with Type 1 SLE)
Impact	I think it’s a temporary interruption in my day-to-day.[…] I still go to work, I still would do my meetings […] I make sure I’m taking my medication […] It’s just a temporary - maybe like I would call it like a speedbump – that slows me down, but it definitely doesn’t stop me. (24 yo female with minimal SLE)
	If I’m – have a general flare-up, I just feel like – I can’t do anything. I can’t even get outta bed (61yo female with Mixed SLE)

Table 4.

Summary of descriptions of flares for patients with SLE and rheumatologists.

	Patients with SLE	Rheumatologists
Patient-Reported Symptoms	The majority of patients described flare symptoms as joint pain, fatigue, and skin issues. Other commonly symptoms included swelling, myalgias, mood disturbance, and a prodrome of flu-like symptoms. Several patients noted brain fog, diffuse pain, and weakness.	Around half of rheumatologists included fatigue, pain or other patient reported symptoms as part of a lupus flare. Two specifically excluded patient-reported symptoms.
Objective Findings	The majority of patients did not consider objective findings to be part of a flare. Only one patient included nephritis and one patient noted lab abnormalities as signs of flare.	All rheumatologists defined flare as SLE disease activity involving organs with more than half requiring objective findings. A few noted an escalation in therapy as part of the flare definition. Two included persistent activity as a subtype of flare.

According to the participants with SLE, the majority of flares lasted a matter of days, with fewer quantifying flare length as weeks or months. Over half of participants explained that they considered stress as the most common trigger for flare. For example, one participant with SLE stated, “Well, I just think the regular stressors that everybody goes through in life can definitely flare up your lupus.” Other common flare triggers participants mentioned included weather or seasonal changes, sunlight, food, and exercise. Almost one-fifth of participants could not identify a clear flare trigger. One participant felt medication non-adherence triggered lupus symptom flares.

Most participants with SLE said they manage SLE flares by resting or “taking it easy”. For example, one participant explained, “I generally try to get more sleep. […] I would make sure that I eat very, very clean and very healthy [which is] better than flare ups. I will try to just rest as much as possible. Catnap, anything, go to bed earlier.” Half of the participants said they felt that steroids were beneficial for flare and about one-third of participants took other over-the-counter pain medications including ibuprofen and acetaminophen. Many participants cited hydration, dietary changes, bathing, relying on support systems or using wraps or topical ointments as beneficial during periods of flare. One participant spoke of adhering to medications as an effective treatment strategy.

Several participants with SLE volunteered without direct probing that flares negatively affected their lives. These participants noted that lupus flares resulted in difficulty performing activities of daily living and functional limitations. Several participants reported feeling unable to move and the need to stay in bed during periods of lupus flares (Table 2). One participant recounted her experience with flares as “I just feel like – I can’t do anything. I can’t even get outta bed.”

Table 2.

Descriptors of patient flare.

		Overall	Minimal SLE	Type 1 SLE	Type 2 SLE	Mixed SLE
		n = 42	n = 5	n = 12	n = 12	n = 13
Symptoms	Joint pain	30	5	9	6	10
	Fatigue	28	0	9	9	10
	Skin issues	27	0	11	6	10
	Swelling	15	3	4	3	5
	Muscle pain	14	1	2	5	6
	Depression, anxiety, mood disturbances	14	0	4	5	5
	Sick, flu, nausea, fever	13	2	5	4	2
	Brain fog	11	0	5	2	4
	All over pain	10	0	0	3	7
	Weakness	7	0	2	2	3
	Ulcers	6	0	3	1	2
Duration	Days	22	3	5	7	7
	Weeks	13	0	5	4	4
	Months	8	1	1	2	4
Triggers	Stress	23	1	7	6	9
	Weather/seasonal change	13	1	5	3	4
	Sunlight	10	0	4	3	3
	Foods	9	1	4	1	3
	Unknown	7	2	0	3	2
	Non-adherence	1	0	0	0	1
Management	Rest	24	1	4	10	9
	Steroids	21	3	5	3	10
	Contact provider	14	0	4	3	7
	Non-steroidal anti-inflammatory drugs (NSAIDs)	12	2	3	4	3
	Diet, hydration	11	1	4	0	6
	Bath or shower	10	1	2	2	5
	Acetaminophen	7	0	1	3	3
	Support system	7	2	2	1	2
	Creams or ointments	7	0	3	3	1
	Wraps	7	0	2	1	4
	Avoid stress	6	1	1	1	3

Descriptions of flare were largely similar across the Minimal, Type 1, Type 2, and Mixed groups, with a few key differences (Table 2). Participants in the Minimal SLE group described flares as primarily joint pain and swelling; none included fatigue, widespread pain, depression, or brain fog as symptoms of flares. In contrast, patients in the Type 1, Type 2, and Mixed groups included fatigue as a symptom of flares, with stress being the most common trigger for flares. Skin issues were primarily a manifestation for participants in the Type 1 and Mixed groups. Rest was commonly described as a treatment for flares in the Type 2 and Mixed groups; steroids were more commonly used in the Mixed group.

Rheumatologist Perspective:

Thirteen rheumatologists from the United States and Canada were interviewed; the mean age was 54 years, 53% were female, and 61% self-identified as non-Hispanic White. The mean duration of rheumatology practice was 25 years, with 10 rheumatologists currently employed in an academic center and 3 practicing in a community setting. All rheumatologists cared for SLE patients; half reported a clinical focus on SLE and 75% had participated in SLE research at some point during their career.

Rheumatologists described lupus flares differently than patients with SLE (Table 4). All rheumatologists defined flare as worsening SLE disease activity. The majority described flare as a general increase in disease activity which could involve one or more organ systems. Of the few rheumatologists who provided specific examples of SLE flare, arthritis and nephritis were the most frequently cited clinical manifestations of flare. Slightly more than half of the rheumatologists required the presence of objective findings of flare that could be assessed on physical exam or laboratory measures. Only a few rheumatologists included a change or increase in therapy as part of the flare definition. Two rheumatologists included persistent disease activity in their description of flare.

Several rheumatologists acknowledged the discordance between the patient and physician view of flare based on their clinical observations. As one rheumatologist said, “feel helpless when a patient comes in my office, she has a perfect immune profile, I cannot find synovitis, and she can’t function. There’s a gap between those two concepts of flare.” Fewer than half of rheumatologists said that they considered patient-reported symptoms such as fatigue and mental health as symptoms of flare. Of these symptoms, fatigue was the most common symptom reported by rheumatologists; although, depression, pain, stiffness, mental health and patient-reported measures were occasionally included in the context of flare. For example, one rheumatologist said, “a change…in signs, symptoms, laboratory tests, and patient-reported measures, they’re sufficient enough to warrant some change in treatment.” Many rheumatologists, however, did not mention fatigue or other patient-reported symptoms, and two specifically felt patient-reported symptoms were not part of lupus flares. A rheumatologist holding this view described flare as “an increase in the inflammatory disease activity; not just the patient coming in and telling me they’re not feeling well but understanding exactly whether they’re not feeling well is related to some inflammatory component of their disease”.

Discussion:

Our results indicate that patients and physicians can have different views on SLE flares. With the exception of those in the Minimal SLE group, we found that patients commonly viewed flares as several days of fatigue and myalgia, which are most consistent with Type 2 SLE symptoms and are often prompted by stress. In contrast, physicians largely restrict flares to Type 1 SLE manifestations. Although most patients had access to their laboratory values, few patient participants in our study included these objective measures as evidence of flare. On the other hand, providers viewed flares as periods of objective increases in inflammation that reflect Type 1 SLE activity and require consideration for adjustment of immunosuppression.

Physician-defined lupus flares have been well studied. The rate of physician-defined flares from large population cohorts and clinical trials is 0.19-1.2 flares per patients annually.^13,32–34 The severity varies from mild flares involving mucocutaneous and musculoskeletal domains to severe flares involving the major internal organs. Major flares are associated with poor prognosis.¹⁷ Physician-defined flares are associated with increased direct and indirect health care costs including more emergency department (ED) visits, higher rates of hospitalization, and greater use of steroids and immunosuppression.²

Studying the impact of patient-reported flares on quality of life, Katz et al. found that patient-reported flares were common, with 85% of patients reporting at least 1 flare in the preceding year and almost 20% reporting more than 7 flares.³³ Patients with higher flare frequency reported worsening of daily function, psychological well-being, and family function as well as work impairment and greater absenteeism.^33,34 Although hospital admissions for self-reported flare were greater in those patients with high flare rates, the overall frequency of admission was low. However, patients with more self-reported flares had frequent emergency department and urgent care visits, thus underscoring the importance of patient perception on health care utilization.³⁴

Despite the impact of lupus flares on clinical outcomes, the measurement of flares remains challenging. In the LFA consensus definition of flare, for example, almost 40% of responders differed in their opinion on the very definition of flare.¹⁸ Similarly, a recent exercise of scoring flares involved 51 SLE paper cases which were assessed by 18 pairs of physicians using the British Isles Lupus Assessment Group (BILAG) flare, SELENA flare index, and revised SELENA flare index. There was agreement in 67%, 72%, and 70% respectively for the three instruments. Disagreement arose when scoring moderate flares as severe flare, scoring persistent activity as flare, and defining flares based on escalation of treatment.³⁵ We found similar results: rheumatologists differed in their definition of flare, with a few rheumatologists including persistent activity as a subtype of flare and only a few including escalation of therapy as part of the definition of flare.

Recognition of patients’ views of flares and the discrepancy between patients and physicians’ views of flares have important implications for patient care and research. Discounting patients’ experiences could jeopardize patient-physician communication and relationship, negatively affecting trust, adherence, and clinical outcomes.^36,37 Incorporating patients’ view of lupus flares into the clinical assessment of SLE activity and applying the Type 1 & 2 SLE Model could provide physicians with a better framework to understand the patient’s concerns. This approach also represents an opportunity for patient education and discussion about management.

Our study highlights important differences between the patient and physician views of lupus flares. This discrepancy could result from a variety of reasons including differences in understanding the nature of their disease; the complex relationship between inflammation, stress and symptoms; and the numerous psychosocial factors that could underlie the experience of symptoms. The discrepancy could also be driven by a difference in perspective between patients and physicians and the attempt by both parties to use an imprecise term to describe a wide spectrum of symptoms and manifestations in a disease as heterogeneous as SLE. In our study, patients described flares in relation to their lived experience; as such, patients did not describe the full breadth or severity of SLE manifestations that an experienced rheumatologist would identify and manage. Moreover, patients, unlike rheumatologists, may not be using a medical definition of flare; rather, patients may instead apply the term from the vernacular use which is typically defined as “a spreading outward, a blaze of light, or sudden outburst.”³⁸

Our findings suggest that the current concept and clinical definition of flare may be insufficient. The exact cellular, molecular, and immunologic mechanisms of flare and the propensity for recurrent flares remains unknown. Flares have been attributed to a variety of dysregulated immune pathways and environmental triggers.³⁹ However, medication non-adherence may be an under-appreciated driver of flare and persistent inflammation.^40,41 Thus, some flares may not solely be due to intrinsic features of the disease. In addition, incorporating time into the concept of flare, as suggested by Petri et al., may help differentiate flare from persistent lupus activity and progressive disease.¹⁷

This study has several limitations, including that all patients who consented to an hour-long, recorded interview from a single academic center in the Southeastern USA may not represent all patients with SLE. Due to the demographics of our lupus clinic, we were unable to enroll a larger population of patients who self-identified as American Indian or Alaska Native, Asian, or Native Hawaiian or Other Pacific Islander. Patient recruitment was purposeful to include ~12 patients who fit within each of the four categories of disease activity over the prior year and is not intended to be a proportional representation of the SLE population. The average disease duration was 15 years, and patients frequently reflected on their entire history of SLE, which could result in recall bias. As the goal of this analysis was to find distinctions between patient and provider’s understanding of SLE flare, we did not attempt to re-assign patient-attribution. Finally, as most patient interviews were conducted by phone, we were unable to assess non-verbal communication.

In summary, this study demonstrates that patients and physicians have different perspectives on the nature of lupus symptomatology and the meaning of flare. This finding supports our prior work to include these symptoms as features of lupus in the Type 1 & 2 SLE Model . Further study is needed to understand the pathophysiology of patient flares and the best way to incorporate patients’ perspective into clinical assessments to improve SLE management.