Objective: 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. Methods: 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. Results: 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. Conclusion: 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.

Objective The clinical variability of systemic lupus erythematosus (SLE) caused by the unpredictability of flares contributes to patients experiencing a diminished sense of social support. Digital health interventions (DHIs) have the potential to improve patients’ social support but have yet to be studied extensively in SLE. Our objective was to assess general and SLE‐specific internet usage as well as specific suggestions for SLE‐related digital resources and tools among patients with SLE at the Washington University Lupus Clinic. Methods Fifty‐six participants were recruited from the Washington University Lupus Clinic. Ten‐minute structured interviews consisting of multiple choice and open‐ended questions were conducted. A descriptive statistical analysis was conducted with the quantitative data, while the qualitative data were analyzed using an open coding approach. Results Nearly all respondents indicated having access to the internet (98.2%). Eighty percent currently use the internet for their SLE. The qualitative data indicate that patients with SLE use the internet for understanding flares and changes in their symptoms and/or laboratory results, want an increased variety of SLE information online, have a desire to exchange personal experiences and knowledge of SLE with others, and desire increased diversity in the methods of delivering digital SLE information. Conclusion Our findings support the continued use of DHIs for patients with SLE. We believe that these findings will aid the future development of DHIs tailored to patients with SLE.

Objective Medication nonadherence contributes to worse health outcomes among systemic lupus erythematosus (SLE) patients. The underlying mechanisms which drive medication nonadherence are poorly understood. The purpose of this study is to explore possible mechanisms of medication nonadherence through eliciting patient experiences. Methods 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 validity and elaboration of the concepts developed. Results Three interrelated themes emerged from the interviews: (1) Why do rheumatologists not know more about lupus or share what they do know with their patients?; (2) Why do I have to take so many drugs and why do the drug not work?; and (3) If my rheumatologist cannot communicate with me, why should I follow the prescribed medication regime? Conclusions Our exploratory findings layout a possible underlying logic by which patients may choose to intentionally engage with medication nonadherence behaviors. Patients suggested that poor communication with their rheumatologists along with a lack of validation of their symptoms contributed to them not valuing physician recommendations. This also contributed to development of a cynical outlook and little belief that medication would improve their condition. While further work is needed to validate these findings, our preliminary work suggests that interventions focusing on developing communication skills among both patients and rheumatologists are necessary to reduce medication nonadherence.

Objective The purpose of this manuscript is to detail development and initial usability testing of an e-toolkit designed to provide skills and knowledge around self-management behaviors for individuals living with systemic lupus erythematosus. Methods Researchers worked with a steering committee of patients and providers to (1) develop a clickable prototype of an e-toolkit and (2) conduct alpha (individuals not affiliated with an academic clinic as patient or provider) and beta (individual patients with systemic lupus erythematosus as well as members of the clinic healthcare team and individuals who work in patient advocacy organizations) usability testing through semistructured interviews. Results During the review of the e-toolkit, the feedback provided by participants in both alpha and beta groups centered on two overarching themes: (1) improving user interface and materials and (2) integration of information and supports between toolkit and clinical personnel. Conclusion Digital approaches that are tailored to individual symptom variation and integrated with a clinical system have the opportunity to enhance ongoing clinical care. These findings support movement toward integrated, team-based care models, tailored digital resources, and use of expanded virtual interaction options to ensure on-going engagement between healthcare providers and systemic lupus erythematosus patients.

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