More than 90% of systemic lupus erythematosus (SLE) patients experience a communication gap with their family and with their care team, according to a recent survey conducted by GfK Roper North America.*
The survey aimed to evaluate the social impact of SLE and identify potential gaps in communication, and found that many SLE patients downplay their symptoms to friends, family, and even their doctors. Respondents also said they don’t worry about long-term health issues. Additionally, doctors and patients agreed that friends and family of lupus patients aren’t always as supportive as they think they are.
“This survey indicates that there is a real problem with communication, but this is also an opportunity to improve the dialogue within the lupus community,” says survey leader Joan Merrill, MD, chair of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation in Oklahoma City. “People may struggle if they feel isolated and lack a sufficient support network.”
The survey was conducted from July through September 2011. It involved more than 950 people in the lupus community including 502 SLE patients, 204 supporters (specified as family members or friends) of people, with lupus and 251 rheumatologists.