Results of a Roper survey of the lupus community highlight that in addition to the physical burdens of lupus, the disease can contribute to significant economic challenges among patients and caregivers. Patients with systemic lupus erythematosus (SLE or lupus), caregivers and physicians overwhelmingly agree that career disruptions caused by the challenges of living with lupus often exact a heavy financial and emotional toll, according to the survey.
A majority of patients, supporters and doctors report that people with lupus change career plans because of lupus, which is a chronic and potentially disabling disease. More than half (63 percent) of respondents with lupus quit working or retired earlier than planned, about two-thirds (67 percent) reduced the number of hours worked, and 51 percent of patients changed to a less strenuous job.
Lupus can occur at any age, but appears mostly in young people aged 15 to 44 – prime working years. Inability to work seems to weigh heavily on patients, emotionally and financially. For example, 82 percent of patients reported that not working makes them feel they are not contributing their fair share to the household, and 83 percent found it devastating to leave their jobs due to lupus.
Many people with lupus say the disease impacts their productivity and has an undesirable effect on their relationships with co-workers. In fact:
72 percent of patients admit they are not as productive as they could be at work as a direct result of lupus.
Approximately 80 percent of lupus patients say that their condition has caused them to take more sick days.
59 percent of lupus patients surveyed say that other people think that lupus affects their reliability and dependability.
About two-thirds (69 percent) of patients say they only tell a few co-workers about having lupus.
"It is important to reinvent yourself in meaningful ways when a chronic illness limits your original life plans," said Joan Merrill, M.D., chair of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation, and consultant to Human Genome Sciences and GlaxoSmithKline. "However, this is hard to do. Friends and family can help by valuing and supporting a new direction or modified goals."
Some people living with lupus have had to think differently about their jobs or careers because they found it difficult to fulfill their responsibilities, due to lupus. As disappointing as this may be, many people living with lupus have been able to find jobs in different or related fields that are more suitable to their situations. There are resources and tips to help you better manage your career, available at UsinLupus.com.
About the National Burden of Lupus Survey
The national survey was conducted by GfK Roper Public Affairs and Communications (GfK Roper North America or Roper) from July through September 2011. It was designed to evaluate the daily and long-term impact of lupus on health, family relationships, career and quality of life, and identify potential gaps in communication. Results were drawn from more than 950 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 (physicians who specialize in treating lupus). The survey was funded and developed by Human Genome Sciences and GlaxoSmithKline.
This release is the second in a series of reports on the National Burden of Disease Survey. For previous releases please visit: New Survey Reveals Lupus Communication Gap as Many Patients Remain Silent on True Impact of the Disease.
People with lupus and those who care for them can visit www.usinlupus.com for online support, information and inspiration. For additional information on lupus, visit the Lupus Foundation of America at www.lupus.org, the Lupus Research Institute at www.lupusresearchinstitute.org, the Alliance for Lupus Research at www.lupusresearch.org and the National Institute of Arthritis and Musculoskeletal and Skin Diseases at www.niams.nih.gov. Except for usinlupus.com, the websites listed are external to Human Genome Sciences and GlaxoSmithKline. Human Genome Sciences and GlaxoSmithKline do not have control over the content of the information provided on these websites and therefore do not warrant their accuracy or completeness.
For more information about Human Genome Sciences, please visit the company's website at www.hgsi.com.
For more information on GlaxoSmithKline, please visit www.gsk.com.
About GfK Roper Public Affairs & Corporate Communications
GfK Roper Public Affairs & Corporate Communications is a division of GfK Custom Research North America. The group specializes in customized public affairs and public opinion polling, media and corporate communications research, and corporate reputation measurement in the United States and globally. In addition to delivering a broad range of customized research studies, GfK Roper Public Affairs & Corporate Communications draws from GfK's syndicated consumer tracking services, GfK Roper Reports® US and GfK Roper Reports® Worldwide, which monitor consumer values, beliefs, attitudes and behaviors in the United States and more than 25 other countries. The division also serves as the official polling partner of the Associated Press conducting the AP-GfK Poll (www.ap-gfkpoll.com).
 NIH. National Institute of Arthritis and Musculoskeletal and Skin Diseases. Lupus. April 2009. http://www.niams.nih.gov/Health_Info/Lupus/do_i_have_lupus.asp. ("Who gets lupus?" sub section) Accessed December 1, 2011.ContactDiana Torres+1-212-819-4895Diana.Torres@edelman.com