Search

ObjectiveWe have developed a new conceptual model to characterise the signs and symptoms of SLE: the Type 1 and 2 SLE Model. Within the original model, Type 1 SLE consists of inflammatory manifestations like arthritis, nephritis and rashes; Type 2 SLE includes symptoms of fatigue, myalgia, mood disturbance and cognitive dysfunction. Through in-depth interviews, we explored how the Type 1 and 2 SLE Model fits within the lived experience of patients with SLE, with a focus on the connection between Type 1 and Type 2 SLE symptoms.MethodsSemistructured in-depth interviews were conducted among adult participants meeting 1997 American College of Rheumatology or Systemic Lupus International Collaborating Clinics criteria for SLE. Participants were purposefully selected for age, race, sex and nephritis history. All interviews were audio-recorded and transcribed. Data were analysed through episode profile and thematic analysis.ResultsThrough interviews with 42 patients with SLE, two patterns of Type 2 SLE emerged: Intermittent (n=18) and Persistent (n=24). Participants with Intermittent Type 2 SLE described feeling generally well when Type 1 is inactive; these participants were younger and had more internal SLE manifestations. Participants with Persistent Type 2 described always experiencing Type 2 symptoms despite inactive Type 1, although the severity may fluctuate. Participants with Persistent Type 2 SLE experienced traditional lupus symptoms of joint pain, hair loss and rash, but less often had severe organ system involvement.ConclusionsBy listening to the stories of our patients, we found two underlying patterns of Type 2 SLE: Intermittent Type 2 symptoms that resolve in synchrony with Type 1 inflammatory symptoms, and Persistent Type 2 symptoms that continue despite remission of Type 1 symptoms.

During routine patient visits, we are frequently met with time and resource constraints making it difficult to provide optimal counselling, consultation with other care team members, and answers to patient questions and concerns. This is particularly true when seeing patients with SLE. With its heterogeneity of symptoms, multi-organ involvement and complex medication regimens, SLE is a difficult disease for patients to navigate and engage in effective self-management. Given the limitations of counselling and patient education in a typical clinic visit, in conjunction with patients who expressed a desire to learn more about their disease, we developed the first annual Lupus Patient Education Event in 2011. Patient education interventions decrease hospitalisations, reduce visits to emergency departments and improve patient quality of life.1–3 Patient education is an important component of health literacy, defined as the degree to which individuals have “the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”.4 The Paasche-Orlow and Wolf Model includes patient knowledge and health education in the causal pathways between health literacy and health outcomes.5 Because low health literacy is associated with worse clinical outcomes in other chronic diseases, improving delivery of patient education in lupus may help increase disease understanding and self-management, resulting in better health outcomes. The Lupus Patient Education Event serves as an opportunity for …