Global survey finds gap in physicians' understanding on impact of lupus on patients' lives

As many people in the lupus community prepare to come together in support of World Lupus Day (May 10), a global survey shows that systemic lupus erythematosus (SLE) patients have difficulty describing their symptoms to their physicians, which leads to a gap in physicians understanding the full impact the illness has on patients' lives.

The online survey of 905 total global respondents across the US, Canada, France, Germany, Italy and Brazil was conducted by GfK on behalf of GSK in 2014. It included 200 SLE patients, 100 caregivers and 75 physicians in the US.

The findings showed that US patients (n=200) have difficulty describing symptoms to their physician and underreport the impact of lupus on their lives:

• 60 percent of patients and 63 percent of physicians agree that patients have difficulty describing their symptoms.
• 77 percent of patients said they only discuss the symptoms that annoy them the most and 83 percent of physicians agreed.
• 61 percent of patients say they minimize symptoms to their physician.
• While patients say they experience a large number of lupus symptoms daily, physicians believe patients only experience most symptoms several times a month.

"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.

Severity is the key driver for reporting a majority of symptoms, yet many high severity symptoms are underreported to US physicians:

• Confusion, headache and decrease in sexual drive are reported as severe symptoms by patients, but are listed by physicians as being in the top 10 most underreported symptoms.
• Physicians are less likely to view a number of symptoms as severe including glaucoma, osteoporosis, decrease in sexual drive and dry eyes, while patients' experiences highlight them as severe.

In the US, patients under-reported the negative impact of lupus on work to physicians when compared to patient and caregivers' actual experiences:

• Nearly two-thirds of patients and caregivers (61 percent) agree that lupus negatively impacted patients' career progression. In contrast, physicians only see one-quarter (25 percent) of patients reporting an impact on their career progression.
• Nearly three-quarters of patients (75 percent) and caregivers (72 percent) agree that lupus is a financial burden, yet physicians say about one-third of their patients (34 percent) report this effect to them.
• 62 percent of patients report taking sick days due to their lupus compared to 34 percent of physicians who believe this is true of their patients.

In the US, caregivers' perceptions of the impact of lupus on patients' self-esteem and social interactions is lower than what is reported by patients and physicians:

• 31 percent of caregivers reported that lupus affected patients' self-esteem and confidence, compared to 40 percent of patients and 45 percent of physicians.
• Only about one in five caregivers (22 percent) reported that lupus affected patients' social interactions, compared to one-third of patients and physicians (33 percent).

In the US, patients feel supported by physicians and caregivers. However, the majority of patients surveyed agreed that family and friends think they can do more than they actually can:

• 72 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.

Communication between US patients, caregivers and physicians is essential to treating lupus, yet there is also a discrepancy in how often patients and physicians recall interacting with each other.

• 83 percent of physicians report seeing patients every two to three months compared to only 63 percent of patients and 68 percent of caregivers reporting this frequency of consultations.

In the US, patients, their doctors and caregivers agreed on the need for more resources and a stronger, more connected lupus community. Everyone in the lupus community desires improvements in self-management of lupus and its symptoms and improved communications with their primary physician. Patients also see conversations with physicians as the second most used resource. Online education materials are the top resource used by patients and caregivers.