Background/Purpose: The patient-specific experience of living with SLE is underreported. While there are data addressing factors influencing the quality of life of patients with SLE, these studies primarily derive from the perspective of the health care provider, not the patient. Changing to the patient perspective will likely improve our understanding of living with SLE, including reasons for medical noncompliance and socioeconomic differences in disease severity. Using an approach drawing from the sociological tool of ethnography, we performed extensive field observations and semi-structured interviews with a cohort (n=9) from the Lupus Clinic at Washington University School of Medicine to understand the patient perspective during the diagnosis of SLE and subsequent care.

Methods: Consented adult patients with SLE were recruited for this study during their scheduled clinic visits. We used a conventional ethnographic methodology to view the SLE experience from the patient perspective. Through long-form, semi-structured interviews (60-70 minutes) and field observations of interviewees, interviewees were encouraged to openly express their experience with SLE. 15 interviews across 9 individuals (6 individuals were interviewed twice) were performed. Interviews took place in a variety of locations including subject’s homes, cafes, public libraries, and clinic office rooms. We determined a core list of questions for each round of interviews. The initial round was based from a review of existing literature on barriers in SLE care and the authors’ clinical experience with perceived unmet needs among individuals with SLE. The second round centered on core themes which emerged from the first round of interview data and were often specific to the interviewee. Audio of interview data was recorded, transcribed, and analyzed using thematic analysis in NVivo 11.0 software.

Results: The dominant theme among patients with SLE is the deterioration of their social structure due to ambiguity and invisibility. Ambiguity derived from the protean nature of SLE disease activity, which disallowed individuals from complying with societal expectations of punctuality and reliability. Additionally, the common debilitating symptoms of SLE (e.g. chronic pain, fatigue, poor sleep quality) are largely invisible to others. Interviewees often attributed this invisibility to creating mistrust among non-SLE individuals in their social networks.

Conclusion: Ambiguity and invisibility contribute to poor quality of life in patients with SLE, with a particular negative effect on the patients’ social networks. These data have the potential to alter how providers administer SLE care. For example, loss of social structure may lead to depression and anxiety, promoting a negative view of having SLE, and driving medication and office visit noncompliance, both of which are major barriers to appropriate SLE care. Awareness of the social implications of having SLE—which are largely underaddressed by clinicians—unlock a potential to vastly improve outcomes by rethinking the doctor-patient interaction and services the health care field offer for these patients.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/clarifying-patient-determined-barriers-in-living-with-systemic-lupus-erythematosus-treatment-a-qualitative-ethnographic-approach/