Exploring the discordance between patient and physician global assessments in systemic lupus erythematosus
Imagine describing a rainbow to someone who sees colors differently than you. One of you emphasizes the vibrant blues and greens, while the other is captivated by the reds and oranges. You're both looking at the same phenomenon, but your experiences of it differ significantly. Similarly, in systemic lupus erythematosus (SLE)—a complex autoimmune disease where the body's immune system attacks its own tissues—patients and physicians often have strikingly different perspectives on how active the disease actually is.
This discrepancy isn't merely a matter of opinion; it represents a fundamental challenge in managing a disease that affects an estimated 14.09 per 100,000 people in China alone, with a striking 10-12:1 female-to-male ratio 2 .
When patients report higher disease activity than their physicians recognize, it's not that one perspective is "right" and the other "wrong"—rather, they're viewing the illness through different lenses. Understanding this disconnect is crucial for improving lupus care, and that's exactly what the SLE Prospective Observational Cohort Study (SPOCS) set out to explore in patients with moderate-to-severe forms of the disease 3 6 .
Asks: "Considering all the ways your illness affects you, how do you feel your disease is today?" Patients typically respond using a 0-10 or 0-100 scale 7 .
Poses a similar question to the clinician: "How active do you believe the patient's disease is today?" using the same scale 7 .
Discordance between PGA and PhGA isn't just a statistical curiosity—it has real-world implications for treatment decisions and patient outcomes. When physicians underestimate disease activity from the patient's perspective, it can lead to inadequate treatment and patient frustration. Conversely, when patients rate their disease activity significantly higher than objective measures suggest, it may signal unmet needs in managing symptoms like pain and fatigue that don't always respond to standard immunosuppressive treatments.
Research in related conditions like psoriatic arthritis has shown that patients tend to score their disease worse than their physicians, with greater discordance for joint assessments than for skin manifestations 9 . Similar patterns appear to exist in lupus, though with their own unique characteristics.
The Systemic Lupus Erythematosus Prospective Observational Cohort Study (SPOCS) represents one of the most comprehensive efforts to understand how lupus behaves in real-world clinical settings. Here's how researchers designed the study:
The study included 830 patients with moderate-to-severe SLE who were followed for up to three years 3 6 .
Patients were evaluated twice annually according to local clinical practice patterns, not a rigid experimental protocol, making the findings particularly relevant to everyday medicine 3 .
At each visit, researchers documented standard disease activity measures (including SLEDAI-2K), current treatments, glucocorticoid doses, and both patient and physician global assessments 3 .
The study also examined whether patients with different biological characteristics—specifically their interferon gene signature—had different disease experiences or treatment responses 3 .
This robust methodology allowed researchers to capture a comprehensive picture of how lupus is managed across multiple clinical settings, and how the disconnect between patient and physician assessments manifests over time.
The SPOCS investigation revealed several important patterns that help explain the discordance between how patients and physicians view lupus disease activity:
| Medication Category | Number of Patients | Percentage |
|---|---|---|
| Antimalarials | 670 | 81.1% |
| Glucocorticoids | 537 | 65.0% |
| Immunosuppressants | 453 | 54.8% |
| Biologics | 175 | 21.2% |
Despite these extensive treatment regimens, the study found that SLE therapy often falls short of ideal targets recommended by international rheumatology organizations, particularly regarding glucocorticoid use and disease activity control 3 . This treatment gap may contribute to the persistent symptoms that patients incorporate into their global assessments.
While the full analysis of PGA-PhGA discordance in SPOCS would be detailed in specialized rheumatology publications, the study was designed to specifically investigate this phenomenon. Previous research in related conditions provides crucial context for understanding what SPOCS likely found:
| Factor | Effect on Assessment Discordance | Evidence from Related Conditions |
|---|---|---|
| Fatigue | Strongly associated with higher patient ratings | Accounts for ~21% of variance in PsA 9 |
| Pain | Leads to higher patient assessment of disease activity | Accounts for ~9% of variance in PsA 9 |
| Functional Disability | Associated with higher patient ratings | Accounts for ~1.2% of variance in PsA 9 |
| Tender Joint Count | Leads to higher physician assessment | Accounts for ~16% of variance in PsA 9 |
| Swollen Joint Count | Strongly influences physician assessment | Accounts for ~1.4% of variance in PsA 9 |
These patterns demonstrate that patients and physicians prioritize different aspects of disease when making their global assessments. For patients, internal experiences like fatigue and pain dominate their perception of disease activity, while physicians necessarily focus on objective measures of inflammation like swollen joints and laboratory markers 7 9 .
| Time Point | Median SLEDAI-2K Score (IQR) | Mean Daily Glucocorticoid Dose (mg) |
|---|---|---|
| Baseline | 8.0 (6.0-12.0) | 6.0 (7.09) |
| 6 Months | Not specified | 9.8 (8.67) |
| 12 Months | 4.0 (2.0-8.0) | Not specified |
The data show that while disease activity scores generally improved over time, many patients remained on significant doses of glucocorticoids, with 20-33% of patients taking doses greater than 5 mg/day throughout the study 3 . This persistent requirement for steroids suggests ongoing disease activity that might be captured differently by patients versus physicians.
Percentage of variance in assessment discordance explained by each factor in psoriatic arthritis studies 9
Understanding the disconnect between patient and physician assessments requires specific research tools and methods. Here are key components of the methodological approach used in studies like SPOCS:
A standardized measure that incorporates clinical and laboratory features to provide an "objective" disease activity score 3 .
Typically 0-10 or 0-100 scales used by both patients and physicians to rate overall disease activity 7 .
Validated questionnaires that capture symptoms like pain, fatigue, and functional limitations 7 .
A biological marker that identifies patients with elevated interferon pathway activity 3 .
Detailed procedures for joint counts, skin assessments, and other physical findings 3 .
The discordance between patient and physician global assessments represents more than just a measurement discrepancy—it reflects the fundamentally different experiences of living with versus treating lupus. For patients, disease activity encompasses not just joint swelling or skin rashes, but the pervasive fatigue that disrupts daily life, the pain that limits activities, and the psychological burden of managing an unpredictable chronic illness 7 9 .
For physicians, who must focus on objective measures to guide treatment decisions—particularly those involving powerful immunosuppressive medications with significant side effects—the "invisible" symptoms patients experience may receive less weight in global assessments. This disconnect can lead to communication breakdowns and dissatisfaction on both sides of the clinical encounter.
The findings from SPOCS and similar studies argue for assessment approaches that:
Consider both patient experiences and clinical measures when determining treatment success
Create tools that specifically capture the symptoms patients find most burdensome
Recognize that "successful treatment" may need to address different goals for patients versus physicians
Future research will need to determine whether aligning these perspectives more closely actually leads to better long-term outcomes for people living with lupus.
The discordance between patient and physician global assessments in lupus is not a problem to be solved, but rather a reality to be understood and incorporated into clinical care. Studies like SPOCS remind us that lupus—like the proverbial rainbow—manifests differently depending on one's perspective. The patient's view from inside the storm of symptoms will inevitably differ from the physician's view through the lens of clinical examination and objective measures.
As we move toward more patient-centered lupus care, the challenge will be to honor both perspectives—to recognize that the subjective experience of illness matters just as much as the objective biomarkers, and that optimal treatment must address both. By continuing to study these different viewpoints, we can develop more comprehensive approaches to lupus management that address the full spectrum of what it means to live with this complex autoimmune disease.
For further reading on lupus diagnosis and treatment guidelines, see the [2025 Chinese guidelines for SLE] 2 , and for more information on patient-reported outcomes in autoimmune disease, explore the literature on [patient global assessment] 7 .