The patient experience with lupus.
COMMUNICATION GAPS EXIST BETWEEN PATIENTS, CAREGIVERS, AND FAMILIES*
It is estimated that 166,000 to 322,000 Americans have systemic lupus erythematosus (lupus). This chronic autoimmune disease can range from mild to severe, cause a wide variety of symptoms, and affect nearly every part of the body.
One of the challenges in managing lupus is the lack of communication between patients, caregivers, and families. In 2011, GfK Roper North America conducted a survey of 957 members of the lupus community, including patients, family members and/or friends, and rheumatologists.*
The survey revealed a serious gap between what patients are really feeling, and what they're willing to share with others, including their rheumatologists. This, in turn, could result in certain symptoms being underreported.
Bottom line? You owe it to everyone involved – especially yourself – to keep the lines of communication open.
* Data from the 2011 National Burden of Lupus survey funded and developed by Human Genome Sciences and GlaxoSmithKline. This survey included 957 people in the lupus community—502 people who reported being diagnosed with SLE, 204 supporters (family members or friends) of people with lupus and 251 rheumatologists. Data on file, GlaxoSmithKline, 2011.
of patients with lupus report they minimize their symptoms when they talk to their physicians.1
of physicians are unaware that patients tend to under-report their symptoms.2