Communication gaps with physicians can lead to suffering in lupus patients, survey finds

A global online survey has found many patients with systemic lupus erythematosus find it hard to describe their symptoms to physicians, leading to gaps in understanding of the illness and care for its patients.

The survey includes responses from more than 900 patients with SLE, caregivers and physicians. Nearly 400 of the respondents were from the U.S.

"We know from previous research that people living with lupus do not want to burden their physicians and loved ones and so they often downplay the frequency, severity and impact of their symptoms," said Sheri Mullen, vice president of immunology and rare diseases at pharmaceutical company GlaxoSmithKline.

Highlighted below are several findings from the survey.

SLE symptoms

  • Roughly 60 percent of patients and 63 percent of physicians agree that patients have difficulty describing their symptoms.
  • More than three quarters (77 percent) of patients said they only discuss the symptoms that annoy them the most and 83 percent of physicians agreed.
  • As many as 61 percent of patients say they minimize symptoms to their physician; and
  • While patients say they experience a large number of lupus symptoms daily, physicians believe patients only experience most symptoms several times a month.
  • Patients report confusion, headache and decrease in sexual drive as severe symptoms, but physicians list them as being in the top 10 most underreported symptoms.
  • Physicians are less likely than patients to view a number of symptoms as severe, including glaucoma, osteoporosis, decrease in sexual drive and dry eyes.

Communication and consultations

  • Seventy-two percent of patients agreed that their family and friends overestimated what they can do.
  • About three-quarters of physicians (76 percent) believe their patients have difficulty communicating their support needs to others.
  • More than 80 percent of physicians report seeing patients every two to three months, yet only 63 percent of patients and 68 percent of caregivers reporting the same consultation frequency.

"This survey shows that there is still more that can be done to give patients the confidence and tools they need to speak up about their lupus and more effectively communicate their support needs," said Ms. Mullen.


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