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01 SLE burden of disease: the patient’s perspective
  1. Jeanette Andersen
  1. Lupus Europe, Denmark


Systemic lupus erythematosus (SLE) imposes a great burden on the lives of patients. Patients’ and physicians’ concerns about the disease diverge considerably. Physicians focus on controlling disease activity to prevent damage accrual, while patients focus on symptoms that impact on health-related quality of life (HRQoL). The existing clinician reported outcomes (ClinRO), such as disease activity indices, remission, low disease activity (LLDAS), response (SRI and BICLA) do not include the patient perspective.

Several investigations show that patients judged in remission by the treating physician, still report the presence of relevant clinical symptoms.1 2

  • Patients and physicians assess the disease differently (discordance up to 58% of cases)

  • Patients tend to score disease activity higher than physicians

  • Patients consider subjective manifestations as more relevant than physicians

  • Physicians consider laboratory abnormalities as more relevant

It seems there is a discordance between patients and physicians when it comes to prioritising outcomes.

The best way to identify the patients’ priorities is through Patient Reported Outcomes (PROs). PROs allow us to capture aspects of the disease which have an impact on patients and constitute their burden of the disease. Ideally, the dialogue between doctor and patient should address the most bothersome symptoms for the individual patient. What is most bothersome for one might not be the same as for someone else and it most likely won´t be the same priority as the doctor has. At the same time, some of the most bothersome symptoms are difficult (if not impossible) to manage with traditional SLE treatments. In these cases, the communication becomes even more important, and a communication gap can be detrimental to the HRQoL and overall care.3


  1. Yen JC, et al. Discordance between patients and their physicians in the assessment of lupus disease activity: relevance for clinical trials. Lupus. 1999;8(8):660–70. doi: 10.1191/096120399680411362.

  2. Cornet A, et al. Living with systemic lupus erythematosus in 2020: a European patient survey. Lupus Sci Med. 2021 Apr;8(1):e000469. doi: 10.1136/lupus-2020-000469. PMID: 33849920; PMCID: PMC8051432.

  3. Cornet A, et al. Patient-doctor communication gap - results of a speed-shop on ‘lupus flare’ at lupus 2022 meetings. Ann Rheum Dis. 2023;82:309. POS0171.

Learning Objectives

  • Describe the burden of the disease from the patient´s perspective

  • Explain the importance of patient-physician communication

  • Distinguish between patient and physician priorities

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