LAA National Lupus Survey
The Lupus Alliance of America National Survey is done. Due to the overwhelming response the results are still being tabulated, however preliminary results from this National survey are below.
Thank you so much to the over 1,700 people that participated in the survey!
Thank you to all the bloggers, group owners on facebook, website owners, and followers on facebook and twitter that posted and reposted the information on our survey to help us spread the word!
We believe the results will help us give a more accurate portrayal of the struggles of those living with lupus, as well as supply more accurate data on medication use, diagnosis and more
The results of this survey will not only help the Alliance learn what those living with lupus need and want, so they may meet those goals, but will also help them obtain state and federal resources for advocacy, awareness, research and more.
In 2009 the Board of Directors of the Lupus Alliance of America in answer to the needs of those they serve, decided to commission a survey on lupus with a clear goal in mind.
Gathering the latest statistics on those living with lupus for the purpose of:
- Spreading awareness about lupus and those who live with it.
- Provide data that will help all of us obtain local and state resources for patient education, awareness and advocacy programs.
- Create better education and support forums for patients, their families and communities.
In 2010 The Lupus Alliance of America, along with our affiliates, and Long Island University/ C.W. Post Campus developed and sent out thousands of these surveys to LAA members through our Newslink, as well as to the general public through our social networks and websites.
The survey was designed to elicit the latest statistics on lupus including:
- Who made up the Lupus Population
- How long it takes most people to be diagnosed
- What symptoms are the most common
- How Lupus affects your daily life
The response to this survey has been overwhelming, with over 1,780 surveys filled out and returned. Not only did we receive a great many more completed surveys than anticipated, we received hundreds of personal testimonials handwritten throughout the survey by lupus patients. Those with lupus have lived for so long without their voice being heard, that many of you used the survey as an opportunity to let us know what is most important to you, and what you want those who know nothing about lupus to understand about this complicated and devastating disease.
Honi Kurzeja, the President of the Lupus Alliance of America stated, "The narrative responses elaborating on the personal experiences of those with lupus were overwhelming and the most surprising part of the results. People are so anxious to have their voices heard, to help people understand the scope of lupus, and to feel what they live every day of their lives. We will be using these narratives in our advocacy and awareness campaigns throughout 2011 to bring more attention to lupus and those affected by the disease.”
Those testimonials will indeed help us tailor our support services to your needs, as well as allow us to spread awareness of what living with lupus is like both to the general public and to our government representatives. Many of these personal stories will be available through our website once the final results of the survey are published later on this Spring.
As for the preliminary results that have been tabulated so far, the results have been as interesting as the personal stories. Surprising to us for instance, was the percentage of blood related cousins (11%) who have lupus, a number higher than that of aunt’s, (7%) mother’s (6%) or sisters (5%). Overall, 30% of those surveyed had a blood related relative who also had lupus. This statistic may help researchers like those at the Feinstein Institute in Manhasset N.Y. who are already conducting a Sister Study in Lupus, decide to also look at cousins to further their research into the genetics of lupus.
The Following are some of the statistics tabulated regarding who makes up the lupus population.
- The average age of the survey participants was 45 years.
- The youngest participant was less than one year old, and the oldest was 89 years old.
- Ninety-seven percent were female; the remaining 3% were male.
- Ninety-five percent reported they were diagnosed with systemic lupus, while nearly 4% were diagnosed with discoid lupus and less than 1% reported having drug-related or other types of lupus.
- The average age of diagnosis of the participants was 34 with the youngest less than one year and the oldest at 78.
Alarmingly, the majority of the respondents reported it took nearly 7 years from when they first experienced symptoms until the time of diagnosis. This is an indication that it is still a difficult climb for those experiencing lupus symptoms to be given a definitive diagnosis. This can ultimately cause a delay in their care and treatment, which often leads to worsening symptoms and damage that might have been prevented had their diagnosis come earlier.
As expected, the majority of the participants reported they experience multiple symptoms. These symptoms are consistent with the American College of Rheumatology’s Eleven Criteria for SLE.
The five most frequently reported symptoms in the LAA Lupus Survey were:
- Fatigue (92.58%)
- Joint pain (92%)
- Muscle pain (79.67%)
- Headache (71.42%)
- Confusion/forgetfulness (70.30%)
Participants also reported receiving a secondary diagnosis of what are commonly referred to as overlapping conditions.
The most prevalent were:
- Arthritis (51.8%)
- Raynaud's phenomenon (44.18%)
- Fibromyalgia (36.07%)
- Anemia (31.16%)
- Sjogren's syndrome (28.03%)
With regard to medications, 72.65% of participants report taking Anti-malarial drugs such as Plaquenil, 67.38% report using oral corticosteroids (steroids) such as Prednisone or Medrol, and nearly 58% report taking non-steroidal anti-inflammatory drugs (NSAIDs). Almost 40% reported they were hospitalized in the past five years due to their lupus. Of these, more than 2/3 said they experienced multiple hospitalizations.
In regards to their standard of living, almost 75% of participants report that they frequently need someone to take over or assist them with tasks or chores when they are not feeling well, a number large enough to indicate that those with lupus need a strong support system of friends and family around them in order to ease the hardships that accompany living with lupus.
Nearly 70% report that their employment has been affected because of lupus, with 36% stating they are no longer able to work. Of those who still work, 34% report needing special help or accommodations in the school or workplace. Examples included needing adjustments in their physical environment such as protection from overhead lighting or working indoors to avoid sunlight. Others talked about needing flexibility in their schedules such as flextime or reducing their hours to part-time status.
Dr. Elissa Giffords, a faculty member at LIU/C.W. Post Campus and a member of the LAA board of directors and Dr. Orly Calderon, also a faculty member at LIU/C.W. Post Campus, have been working hard to finish the data collecting for the LAA National Survey. They both note that they are very pleased with the response rate, which represents one of the largest studies on lupus to date.
They commented, “We are very excited about these findings, and we feel that we have given a voice to many individuals with Lupus who are eager to share their experiences.”
“In addition to responding to the survey questions, people shared thousands of extra narrative responses elaborating on their experiences of living with lupus.”
Drs. Giffords and Calderon excitedly described plans for several journal publications to share what they learned with the academic and medical communities. Dr. Calderon added that she was struck by the fact that nearly half of the population was unable to work. “This may have implications regarding the lack of sufficient representation of this population’s interests in society,” she says. “Clearly, there is a need for advocacy here and we hope that our findings will help the public to understand the most important challenges faced by those with the disease.”
Lupus, has long been understudied and under noticed by researchers, pharmaceutical companies, and our government. We have seen some positive changes over the last few years and lupus has begun to get the recognition in the medical community that lupus sufferers deserve. The results of the LAA survey clearly show that there is still much work to be done. However, now with the recent approval of Benlysta, the first new drug designed for lupus in over 52 years, we believe we are at the dawning of a new age in lupus research and care.
The statistics tabulated from the survey will help us to hopefully gain attention from other pharmaceutical companies who may be interested in throwing their hats in the lupus treatment ring. These findings will also assist us gathering funds from the government for awareness campaigns, not just for the general public but for doctors and nurses as well, to help them learn more about the signs of lupus and understand how to diagnose it, therefore helping ease the suffering of those living with the disease. Better and faster diagnoses can only help lower medical costs from patients who become sicker and sicker because they are left undiagnosed for too long.
We cannot thank the public and our members enough for participating in this survey and for their enthusiasm in sending us their stories on living with lupus. Your voices will be heard through us as we take these results and push forward into the future where we all hope the cure is waiting to be found.
All of the completed surveys have been analyzed with the assistance of faculty members at Long Island University, C.W. Post Campus, who have donated their time and expertise.
Please visit our Survey thank you page where all of those who have helped us from design to distribution are listed as our way of saying thank you for helping us spread the word about our survey and spread awareness about lupus!