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New survey reveals lupus communication gap as many patients remain silent on true impact of disease
Issued: Tuesday 20 March 2012, Rockville, Maryland, and Research Triangle Park, NC
Results of a new Roper survey of the lupus community released today highlight a communication gap between people with systemic lupus erythematosus (SLE, lupus) and the people who care for and about them. The Roper survey 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.
The results of the national survey were drawn from more than 950 people in the lupus communityâ€” 502 people who reported being diagnosed with SLE, 204 supporters (family members or friends) of people with lupus and 251 rheumatologistsâ€”and found that patients often downplay their pain and other symptoms. Eighty-seven percent of people with lupus said they downplay symptoms to avoid upsetting their families, and 52 percent reported that they minimize their symptoms to their physician. Yet, 72 percent of physicians surveyed said they were not aware of patients minimizing their symptoms. This difference in perceptions may lead to increased difficulty in managing the complexities of lupus. Adding to this communications gap, almost half (48%) of patients say they have difficulty describing their symptoms to their physician.
â€śThis survey highlights some of the challenges I see in my clinic every day,â€ť said Joan Merrill, M.D., chair of the Clinical Pharmacology Research Program at Oklahoma Medical Research Foundation, a leading national lupus center. â€śI worry about the patients who may have trouble starting a candid conversation with me about how lupus is affecting them and their families. The more we know, the more we may be able to help,â€ť she added.
Lupus can affect almost every part of the body and can cause extreme fatigue, painful and swollen joints, unexplained fever, and skin rash. It also can lead to kidney failure, heart and lung inflammation, central nervous system abnormalities, inflammation of the blood vessels and blood disorders, all these symptoms can flare unpredictably and often are invisible to others.
Many people with lupus say they are affected by symptoms nearly every day, and the frequency of these symptoms is sometimes underestimated by others. For example, 51 percent of patients surveyed reported arthritis/joint pain as the most prevalent symptom they experienced every day. However, when doctors were asked to rank the top three most common problems associated with lupus, only 35 percent selected arthritis as the most commonly reported daily symptom.
Lupus can impact more than a personâ€™s health. Eighty-one percent of patients surveyed compared lupus with being on a rollercoaster, as they never know what to expect. Seven out of 10 patients (68 percent) said lupus affects virtually every relationship they have, and a similar number (74 percent) of lupus supporters said the same. Interestingly, while supporters take the word â€śsupportâ€ť to heartâ€”with nearly eight in 10 (78 percent) describing themselves as very supportiveâ€”only half (52 percent) of patients say their family and friends are very supportive, and only 34 percent of doctors perceive a patientâ€™s family and friends as â€śvery supportive.â€ť
Despite patients and their supporters agreeing on the level of impact lupus can have on relationships, many patients said they felt their family and friends did not understand the diseaseâ€™s true burden. Three-fourths (75 percent) of patients said they felt their family and friends overestimated what they can do. Further, 67 percent of patients said that their family and friends believe they have become unmotivated due to lupus.
Lupus patients, their doctors and their supporters agreed on the need for more resources and a stronger, more connected lupus community:
- 87 percent of patients and 95 percent of supporters said they wished there were more resources available to help handle issues faced by patients.
- 54 percent of doctors were frustrated by the limited resources available to educate patients.
- 34 percent of patients did not think that there was a community available where lupus patients had a voice and could be heard.
â€śThis survey indicates that there is a real problem with communication, but this is also an opportunity to improve the dialogue within the lupus community,â€ť Dr. Merrill said. â€śPeople may struggle if they feel isolated and lack a sufficient support network. Rethinking the dynamics of our relationships with people who have a chronic illness can be empowering for all of us.â€ť
About the National Burden of Lupus Survey
The survey was conducted by Gfk Roper Public Affairs and Communications (GfK Roper North America or Roper) from July through September 2011. It involved 502 people who self reported that they had received a diagnosis of lupus, 204 supporters 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.
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, 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 (HGS), please visit the companyâ€™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 GfKâ€™s syndicated consumer tracking services, GfK Roper ReportsÂ® US and GfK Roper ReportsÂ® 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).