Patients With SLE Suffer More Than Physicians Perceive

Ines Martins, PhD avatar

by Ines Martins, PhD |

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Results from a survey conducted by GfK in 2014 indicated that patients with systemic lupus erythematosus (SLE) have difficulties describing their symptoms to their physicians, leading to a gap in physicians’ understanding of the full impact the illness has on these patients’ lives. The survey was conducted by GfK on behalf of GSK, one of the world’s leading research-based pharmaceutical and healthcare companies.

A total of 905 total global respondents across the United States, France, Italy, Canada, Germany and Brazil took part in the research through 25 minute interviews. Globally it involved 350 people who self-reported they had received a diagnosis of lupus, 250 caregivers who cared for a sufferer of SLE, and 305 physicians directly involved in diagnosing and treating SLE.

Results revealed that 60% of patients and 63% of their doctors agree patients have difficulties in describing their symptoms. Furthermore, 77% of patients only talk about their most distressing symptoms (with 83% of doctors agreeing) while 61% of patients referred minimizing their symptoms to their doctor.

Results from the survey also indicate that patients report suffering from daily lupus symptoms, however, doctors have the belief that patients only have distressing lupus symptoms on a monthly basis.

“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. 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 Sheri Mullen, VP of Immunology and Rare Diseases at GSK in a recent news release.

According to the survey’s results, severity is a major factor in lupus symptoms, however many patients underreport their symptoms’ severity to their doctors, including headaches, confusion, and decrease in sexual drive. Results also showed that doctors underrate the severity of symptoms such as osteoporosis, glaucoma, decrease in sexual drive and dry eyes. Patients are likely to underreport their condition’s negative impact on work, hiding their actual symptom experiences. Specifically, 61% of patients and their caregivers reported SLE has a negative impact on patients’ career progression, while doctors only see 25% of patients talking about this matter. In the survey, there was an agreement between patients (75%) and caregivers (72%) regarding SLE’s financial burden with only 34% of doctors mentioning their patients discuss this topic.

When considering the impact of the disease on self-esteem and social interactions, the results showed that 31% of caregivers mentioned the condition affected patients’ confidence, compared to 45% of doctors and 40% of patients. A total of 72% of patients agreed that their family and friends overestimated what they can actually do while 74% of doctors believe patients have difficulties in communicating their needs to others.

In the US, patients, doctors and caregivers alike agreed on the need for more resources and a stronger, more connected lupus community. Patients see conversations with physicians as the second most used resource, while online education materials are the top resource used by both patients and caregivers.