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22 The patient´s voice
  1. Jeanette Andersen
  1. Lupus Europe, Denmark


Systemic lupus erythematosus (SLE) is a very complicated and heterogeneous disease, and the popular saying is that no two lupus patients are the same. This of course also means that the treatment and planning of care can be very complicated and needs to be adjusted to the individual patient.

One of the best ways to achieve this goal is through shared decision making. If the patient feels like they have a voice in the treatment plans the probability of treatment adherence increases substantially. On average the SLE patient is more aware of their own symptoms, disease progression and medication than patients with less complicated or less heterogeneous diseases. They need to become experts in their disease because they are the ones living with the symptoms and can often ‘feel’ a flare coming on before the laboratory results show it. Health-related-quality of life (HRQoL) when living with a chronic disease like SLE very much depends on how you self-manage; living a healthy life, keeping active, prioritising everyday tasks according to energy-level etc. The engaged and informed patient can be both a help and a burden when it comes to the physican´s disease management. It helps if the patient has the right medical information and respects that the physician has the expertise to decide what is best for them.1 A patient needs to know that not every symptom is because of lupus and that they might not be flaring, even though they feel like they are.

This ‘complicated’ care of an SLE patient often takes more than one health care professional. Apart from a multidisciplinary team of physicians each specialised in their own manifestations (like kidneys, lungs, heart etc.) it is often beneficial to involve other areas such as specialised nurses, physiotherapists, psychologists, occupational therapists etc. This multidisciplinary team of course requires a good coordination, which should not be put exclusively on the patient.


  1. Cornet A, et al. Patients expectations, and what we (can) do about it. Lupus Sci Med.2020;7:doi:10.1136/lupus-2020-eurolupus.7.

Learning Objectives

  • Explain the importance of involving patients in shared-decision-making

  • Describe how a multidisciplinary team can be used in the SLE care

  • Describe the role of the informed patient in their own care

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