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ACR Open Rheumatol. 2019 May;1(3):135-144. doi: 10.1002/acr2.1020. Epub 2019 Apr 22.

"…Not Having the Real Support That We Need": Patients' Experiences with Ambiguity of Systemic Lupus Erythematosus and Erosion of Social Support.

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Division of Rheumatology, Department of Medicine, Washington University School of Medicine, Saint Louis, Missouri, USA.
Department of Behavioral Science and Health Education, College for Public Health and Social Justice, Saint Louis University, Saint Louis, Missouri, USA.
Division of Immunobiology, Department of Pathology and Immunology, Washington University School of Medicine, Saint Louis, Missouri, USA.
Andrew M. and Jane M. Bursky Center of Human Immunology and Immunotherapy Programs, Washington University School of Medicine, Saint Louis, Missouri, USA.



The patient-specific experience of living with SLE is underreported, particularly when studying factors associated with health-related quality of life (HRQOL). Recent work has suggested that biomedical interventions are only partially predictive of HRQOL measures. A qualitative analysis of patient-specific experiences can uncover additional root causes of impaired HRQOL in SLE populations beyond the scope of quantitative questionnaires.


Consented adult patients with American College of Rheumatology- or Systemic Lupus International Collaborating Clinics-classified SLE were recruited. Ten semi-structured interviews were conducted across six participants. Interviews were audio recorded, transcribed, and analyzed using an iterative process. Findings were presented to an interactive public forum with SLE patients family members and friends of patients, and health care professionals to assess accuracy.


Four themes emerged from the interviews: 1) ambiguity, inconsistency, and lack of symptom predictability due to SLE disease courses, 2) poor communication with family/friends/partners, and poor bi-directional communication between health care providers and patients (informational support), 3) lack of validation for patients' experiences (appraisal support), and 4) problematic aspects of social support including negative support and patients' inability to reciprocate support due to role changes. Data also indicate a reciprocal association between appraisal and informational sources of support.


Findings indicate that inadequate appraisal and informational support from informal and formal sources are salient factors influencing HRQOL among SLE patients. Findings also point to the necessity of integrating community organizations, physicians, and friends and family of SLE patients into capacity building interventions aimed at enhancing these sources of social support.


Qualitative Research; Social Support; Systemic lupus erythematosus (SLE)

[Available on 2020-05-01]

Conflict of interest statement

Disclosure of Interest/COI: AHJK participated in consulting, advisory board, and speaker’s bureaus for Exagen Diagnostics, Inc. and advisory boards for GlaxoSmithKline. JL, JR, and EAB do not have any disclosures to report.

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