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.
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“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.
While 52% of lupus patients surveyed admitted minimizing their pain and other disease-related concerns to their physicians, 72% of rheumatologists surveyed were unaware that patients were minimizing their symptoms. Almost half (48%) of patients said they have difficulty describing their symptoms to their physician and more than three-quarters (77%) of people with lupus stated that it is the unpredictability or variability of symptoms that has the biggest impact on their relationships, work and daily function. Additionally, 76% of doctors believed it is the severity of lupus symptoms that has the most impact on people with lupus, but only 59% of people with lupus agreed.
While 52% of lupus patients surveyed admitted minimizing their pain and other disease-related concerns to their physicians, 72% of rheumatologists surveyed were unaware that patients were minimizing their symptoms.
Michael D. Lockshin, MD, director of the Barbara Volcker Center for Women and Rheumatic Disease and co-director of the Mary Kirkland Center for Lupus Research Hospital for Special Surgery in New York, says the survey spoke loud and clear to something he experiences often with his own patients with chronic diseases, such as lupus. However, he also says that doctors of patients with chronic illnesses sometimes miss the signs of larger issues in their patients. “Physicians, if they’re very rushed, tend not to catch very subtle details,” he says. “They’ll look at the lab test, use the examination, and don’t think about things that maybe aren’t shown based on the casual history.”
But this lapse in communication often begins with the patient, he says. “It is partly a learned response. A lot of what they’re suffering is not visible,” he says. “Patients have to be their own advocate because others won’t advocate for you … and that’s not easy for a lot of people to do.”
Overwhelmingly, 87% of SLE patients and 96% of their supporters said they wished there were more resources available to help handle issues faced by those with the disease—and 50% of the rheumatologists surveyed agreed, admitting to frustration with the limited resources available to educate patients and their families about the disease.
Dr. Lockshin’s institution is doing what they can to help. Their social service department has a lupus support group for patients where they can talk, get advice and connect with others dealing with the disease. Additionally, Dr. Lockshin’s team has initiated a course for medical students about best practices for handling patients with chronic illnesses. “The goal of the course is to hear the unsaid and see the unseen … the hints are there. You have to listen between the lines to things they are alluding to that are easy to dismiss,” Dr. Lockshin says.
* Disclosures: This survey was sponsored and funded by Human Genome Sciences and GlaxoSmithKline. In addition, Dr. Merrill was speaking on behalf of Human Genome Sciences and GlaxoSmithKline as a paid consultant for the purposes of this project.
Alexandra Schultz is a writer based in New Jersey.