Lupus Alliance of America Survey: Results coming in Spring 2011
The Lupus Alliance of America is a national organization that supports research to find a cure for lupus or to improve treatment of the disease. They recently collaborated with Long Island University / C.W. Post Campus social work faculty to develop a survey that was completed by persons living with lupus and by parents who answered on behalf of their young children with lupus. The purpose of this survey is to increase the scant knowledge about the experiences of people with lupus, to disseminate information, improve practice, develop programs and to advocate for policy. The survey was available either online or in hard copy form and consisted of over 35 questions that addressed individuals’ symptoms, social support, medical experience, and concerns regarding everyday living.
Over 1,780 individuals participated in the survey, with an average age of 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, nearly 4% were diagnosed with discoid lupus and less than 1% reported having drug-related or other types of lupus. The Lupus Alliance reports that due to the high volume of responses received, the findings are not complete, but some early statistics have been compiled and show some interesting findings. Surprising to us 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.
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 frequent symptoms in the LAA Lupus Survey are fatigue (92.58%), joint pain (92%), muscle pain (79.67%), headache (71.42%), and confusion/forgetfulness (70.30%).
Participants also reported receiving a secondary diagnosis of what are commonly referred to as overlapping conditions. The most prevalent are arthritis (51.8%), Raynaud's phenomenon (44.18%), Fibromyalgia (36.07%), Anemia (31.16%), and 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 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. 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 include 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 about Lupus to date.
“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,” they said. “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, which affects over 2 million Americans 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. However, the results of the LAA survey clearly show that there is still much work to be done.
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.”
The Lupus Alliance of America is planning on having all of the results of their survey ready for publication by spring 2011. Results will also be posted on their website at www.lupusalliance.org.