Background We have proposed a new model that divides SLE manifestations into Type 1 (objective signs of inflammation) and Type 2 (generalized pain and fatigue not clearly due to inflammation). We sought the opinions of patients and rheumatologists to assess the model’s face-validity based on their experience living with and/or managing SLE.
Methods Recorded interviews were conducted and analyzed with 42 adults with SLE and 13 rheumatologists. Patients were purposefully recruited to reflect a spectrum of active and inactive Type 1 and 2 SLE. Clinicians were intentionally selected to include leading experts in SLE and community rheumatologists.
Results Most patients approved of the Type 1 & 2 SLE model and several patients said it was ‘spot on.’ Almost all patients accurately characterized their experience with SLE has having more Type 1, 2, or Mixed symptoms based on their clinical history. One patient with predominantly Type 2 symptoms felt that she had only Type 1 disease as she believed inflammation caused her chronic pain and fatigue. Two patients had difficulty separating Type 1 and 2 symptoms, one having only experienced these together and the other feeling the categorization was ‘limiting and binary.’ Many patients discussed the connection between their Type 1 & 2 symptoms.
The majority of rheumatologists approved of the model. Many reported using a similar approach and found the addition of specific labels helpful. They felt it could be useful for counseling patients on symptom etiology and the expected impact of medications. Some felt applying the model in patient care could help them determine their therapeutic approach. Several rheumatologists emphasized that Type 2 symptoms could only be found in patients with an established diagnosis of SLE. In addition, a few rheumatologists were concerned about labeling Type 2 symptoms as ‘SLE’ since they attributed these symptoms to co-morbid conditions. Conversely, two providers noted that Type 2 symptoms could sometimes be part of Type 1 SLE activity.
Conclusion The Type 1 & 2 SLE model was well accepted by both patients and rheumatologists and considered as a useful approach to identifying and treating SLE manifestations. The concern that SLE could be mis-diagnosed in patients with only Type 2 symptoms indicates the importance of limiting the use of this model to patients meeting classification criteria for SLE. Many patients and several physicians suggested that the connection between Type 1 and 2 SLE may reflect an inflammation-driven subset of Type 2 symptoms.
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