Global Survey Shows Lupus Patients Under-report Their Symptoms

Ines Martins, PhD avatar

by Ines Martins, PhD |

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Studies have revealed there is a gap between what lupus patients experience and what they tell their clinicians with results from a recent survey showing that closing this gap may lead to better communication and improved clinical management of the disease. The 2014 online survey funded and developed by GSK included 905 global respondents from Italy, Germany, France, Brazil, Canada and the United States.

Of the 200 lupus patients from the United States who took part in the survey, 60% reported difficulty describing their lupus symptoms to their doctor and 77% under-reported lupus symptoms. The survey also included 100 caregivers and 75 physicians.

Lupus is a complex and poorly understood condition that affects many parts of the body and causes symptoms ranging from mild to life-threatening. There are some types of lupus that solely affect the skin – such as discoid lupus erythematosus and subacute cutaneous lupus erythematosus. However, the term “lupus” is most often used to describe a more severe form of the condition called systemic lupus erythematosus (SLE), which can affect many parts of the body, including the skin, joints and internal organs.

Symptoms range from mild to severe, and many people will have long periods with few or no symptoms before experiencing a sudden flare-up, where their symptoms are particularly severe. Even mild cases can be distressing and have a considerable impact on a person’s quality of life.

Results from this survey revealed that lupus patients from the United States under-reported the negative impact of their condition to doctors when compared with patients’ and caregivers’ actual experiences:

  • 61% of the patients and caregivers agreed that the disease had a negative impact in the patient’s career progression. However, doctors only saw 25% of lupus patients reporting an impact on their career progression.
  • 75% of the patients and 72% of their caregivers agreed that the disease is a financial burden. In contrast, doctors said that only about 34% of their patients reported this negative effect.
  • 62% of patients reported taking sick days as a consequence of the disease, however only 34% of physicians believe this to be true.
  • 83% of physicians reported seeing their patients every two to three months, however only 63% of patients and 68% of caregivers report such frequency of consultation attending.

In the United States patients with lupus, their physicians and caregivers agreed it is necessary to have more resources and a stronger lupus community. They also believe there is a need to improve disease self-management and its symptoms while improving the communication between patient and physician. Furthermore, patients also see conversations with physicians as the second most used resource, while online education materials are the top resource used by both patients and caregivers.