National Burden of Lupus Survey Backgrounder

About the National Burden of Lupus Survey

Approximately 322,000 Americans have systemic lupus erythematosus (SLE), but the burden of lupus still remains largely unknown to the public. Lupus is a chronic, autoimmune disease that can range in severity.[1] It is also a disease of flares and periods of relatively quiet disease activity that can affect the everyday lives of people with lupus. Frequently, the symptoms are invisible to others, leading to disconnects between what people with lupus experience and how others perceive them.

The 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 survey was conducted by GfK Roper North America from July through September 2011. It involved 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.

By The Numbers: Survey Highlights

The National Burden of Lupus survey uncovered issues, knowledge gaps and lifestyle concerns affecting the lupus community. Some of the key findings include:

Communication Challenges Are Significant

· 87% [46% describes very well/41% describes well] of people with lupus in this survey admitted minimizing their pain and other disease-related concerns to avoid upsetting their families, while 52% [19% strongly agree/33% somewhat agree] report that they minimize their symptoms when they talk to their physician. Conversely, 72% [43% somewhat disagree/29% strongly disagree] of physicians surveyed were not aware of patients minimizing their symptoms.

• Almost half (48%) [21% strongly agree/27% somewhat agree] of patients say they have difficulty describing their symptoms to their physician.
• More than three-quarters (77%) [39% most impactful/38% somewhat impactful] of people with lupus state that it is the unpredictability or variability of symptoms that has the biggest impact on their relationships, work and daily function. While two-thirds of supporters (66%) agreed [34% most impactful/32% somewhat impactful] with patients that the unpredictability or variability of symptoms has the most impact, more than half (65%) also agreed [38% most impactful/27% somewhat impactful] that the severity of the disease symptoms has an impact.
• 76% [48% most impactful/28% somewhat impactful] of doctors believe it is the severity of lupus symptoms that has the most impact on people with lupus, but only 59% [34% most impactful/25% somewhat impactful] of people with lupus agree.

· 51% of people with lupus reported arthritis/joint pain as the most prevalent symptom on a daily basis, while only 35% of doctors ranked such pain as highly prevalent.

· Nearly half (46%) of people with lupus said they experienced fatigue on a daily basis, yet only 22% of their supporters saw this as a prevalent symptom.

· 75% of people with lupus say their family and friends think they can do more than they actually can [36% strongly agree/39% somewhat agree]; think they can improve their condition by eating better or exercising more (80%) [38% strongly agree/42% somewhat agree]; and believe they can identify with living with lupus (67%) [26% strongly agree/41% somewhat agree].

· Half of patients (52%) say their family and friends are “very supportive” while 78% of supporters describe themselves as “very supportive” of family and friends with lupus. However, only 34% of doctors perceive a patient’s family and friends as “very supportive.”

· While half of people with lupus (51%) “strongly agree” they can talk freely with their doctors, only one in three (33%) supporters agrees with this statement.

Additional Findings Regarding the Everyday Impact of Lupus

· Having lupus caused 85% of people with lupus to limit their recreational activities over the last six months [34% extremely limited/34% limited/17% slightly limited].

· 68% [34% strongly agree/34% somewhat agree] of people with lupus said lupus affects virtually every relationship they have, and a similar number (74%) [27% strongly agree/47% somewhat agree] of lupus supporters said the same.

· 70% [33% very significantly/37% mostly significantly] of people with lupus surveyed said that lupus affected their ability to perform daily responsibilities.

· Nearly three-quarters (74%) [33% strongly agree/41% somewhat agree] of people with lupus agreed that their physician advocates for them and 81% strongly agree or somewhat agree their physician understood their symptoms.

· More than half (56%) [30% nearly every day/26% more than half the days] of people with lupus reported feeling hopeful or optimistic, regardless of lupus, but more than half (57%) [31% very significantly/26% mostly significantly] also said it significantly impacted their self-worth.

Community and Resources

· 87% [48% strongly agree/39% somewhat agree] of people with lupus and 96% [58% strongly agree/37% somewhat agree] of supporters said they wished there were more resources available to help handle issues faced by people with the disease.

· 54% [16% strongly agree/38% somewhat agree] of doctors either strongly or somewhat agreed that they were “frustrated” by the limited resources available to educate people with lupus.

· Less than one in five (17%) doctors “strongly agreed” that they have the resources they need.

· More than 80% of physicians encouraged people with lupus to join a support community, yet only 39% of them actually joined a support community; however, 50% of people with lupus have accessed an online or in-person education program.

· 34% of people with lupus did not think that there was a community available where they had a voice and could be heard.

Economic Impact

· Three-fourths of all people with lupus (74%) [44% strongly agree/30% somewhat agree], supporters (78%) [38% strongly agree/40% somewhat agree] and physicians (92%) [51% strongly agree/41% somewhat agree] agreed that having lupus is a financial burden.

· 67% of people with lupus report reducing the number of hours worked, and 63% quit work and/or retired earlier than planned.

· More than half (58%) of people with lupus “strongly agreed” that having to leave their job was devastating and that not working makes them feel inadequate (84%) [51% strongly agree/33% somewhat agree].

· 31% of people with lupus reported being employed full-time.

Gender and Age Distinctions

· More men than women reported that “lupus makes them feel flawed as a person” (69% vs. 55%) [describes very well or describes somewhat well] and that “nothing more can be done to help my condition” (60% vs. 46%) [describes very well or describes somewhat well].

· Interestingly, more men than women also reported that they have tried almost all of the coping mechanisms asked about in the study including yoga (55% vs. 40%) and joining a support group (58% vs. 32%).

· 84% of people with lupus ages 18 to 34 are more likely to say that they feel depressed, down or hopeless as a result of lupus (vs. 77% of those 35 to 54 and 65% of those 55+) [nearly every day or almost all days].

· People with lupus ages 18 to 34 are twice as likely as those 55+ to say they actively seek out others facing the physical and emotional stress of lupus (68% vs. 33%) [strongly or somewhat agreed].

^*The survey was funded and developed by Human Genome Sciences and GlaxoSmithKline.

 

 

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