Burden of Disease
Health Disparities
Recent studies indicate that lupus incidence rates are almost three times higher in black women than white women, and affect 1 in 537 young African American women.14,15 Minority women tend to develop lupus at a younger age, experience more serious complications and have higher mortality rates—up to three times the mortality rate of white women. Young black women who have lupus nephritis tend to have a more severe disease course and are more likely to progress to end stage renal disease. In addition, non-white patients are more likely to suffer from lupus related depression, cardiovascular disease and diabetes and have worse health-related quality of life than white patients. Health disparities are extremely complex, and may play a role in the burden of lupus nephritis in this population. Disparities may be due to genetics, disease comorbidities and a variety of social determinants that influence health outcomes.
Many people with lupus experience ongoing inflammation and damage, which contribute to general fatigue, chronic pain, mood disturbances, poor sleep quality and cognitive impairment. Fatigue is experienced by about 85% to 92% of people living with lupus; fifty percent of people living with lupus rate fatigue as the most disabling symptom of lupus. People with lupus can have a significantly lower quality of life than people with other chronic diseases.
SLE is a costly condition. Mean annual expenditures for persons with SLE were $12,238 greater than those for persons without SLE; for persons with SLE related nephritis, mean medical expenditures were $46,862 greater than for persons without SLE. Persons with SLE related nephritis had the highest average per patient annual cost at $64,195, when compared with 10 other chronic diseases.
Late diagnosis and delayed treatment contribute to poor outcomes and increased morbidity and mortality. Improved knowledge of lupus among health care professionals may result in earlier and more accurate diagnoses. This, in turn, could help to improve disease management and quality of life, while diminishing adverse effects for people living with lupus.
The clinical spectrum of lupus ranges from mild to life threatening. Lupus is a disease of flares in symptoms and disease activity. Complications can arise suddenly. As a multi-system disease, people living with lupus regularly see primary care providers as well as several medical specialists.
There are limited options available for treatment of lupus. Belimumab, approved by the FDA in March 2011, is the first and only drug designed specifically to treat lupus. Most other medications used to treat lupus are prescribed off-label. These medications do not cure lupus and often have significant side effects.
What Are the Symptoms of Lupus?
Symptoms of lupus vary, but some of the most common symptoms of lupus are:
· Pain or swelling in joints
· Muscle pain
· Fever with no known cause
· Red rashes, most often on the face
· Chest pain when taking a deep breath
· Hair loss
· Pale or purple fingers or toes
· Sensitivity to the sun
· Swelling in legs or around eyes
· Mouth ulcers
· Swollen glands
· Feeling very tired
· Anemia (a decrease in red blood cells)
· Headaches
· Dizzy spells
· Feeling sad
Confusion
· Seizures.
Symptoms may come and go. The times when a person is having symptoms are called flares, which can range from mild to severe. New symptoms may appear at any time.
Patient Education
It is vital that you take the patient takes an active role in their treatment. One key to living with lupus is to know about the disease and its impact. Being able to spot the warning signs of a flare can help prevent the flare or make the symptoms less severe. Many people with lupus have certain symptoms just before a flare, such as:
· Feeling more tired
· Abdominal Pain
· Rash
· Fever
· Headache
· Dizziness.
Regular provider visits are essential even when symptoms are not severe. These visits help to determine disease progression by:
· Symptom changes
· Predicting and preventing flares
· Changing the treatment plan as needed
· Detecting side effects of treatment
It is also important to find ways to cope with the stress of having lupus. Exercising and finding ways to relax may make coping easier. A good support system can also help. A support system may include family, friends, community groups, or healthcare providers. Many people with lupus have found support groups to be very useful. Besides providing support, taking part in a support group can be helpful to keep a good outlook. Learning more about lupus is very important. Studies have shown that patients who are informed are more involved in their own care.
Source:
http://b.3cdn.net/lupus/8085bc0a72575355b2_lfm6zqgst.pdf
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