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Systemic Lupus Erythematosus:
Implications for Health Psychology
Dudley Ames
Forest Institute of Professional Psychology
Springfield, MO
Definition of Disease/Condition:
Systemic lupus erythematosus (SLE), a chronic autoimmune disease,
can cause various problems such as inflammation, rashes,
arthritis, anemia, seizures, and psychiatric illness and often
affects the internal organs. The disease mimics so many disorders
it has been misdiagnosed as everything from rheumatoid arthritis
to schizophrenia (Kotzin, 1993).
With lupus, as well as with other autoimmune disorders, the
immune system loses its ability to tell the difference between
its own cells and tissues, and foreign substances (antigens).
When this happens, autoantibodies are produced which in turn
attack the body's own cells and tissues, causing pain and
inflammation. In addition, some autoantibodies join with
substances from the body's own cells or tissues to form
molecules, called immune complexes, which build up in the body
and contribute to inflammation and tissue injury.
In 1982, the American College of Rheumatology revised the
criteria for the diagnosis of SLE (Tan et al., 1982). If a
patient displays four or more of the following symptoms (either
serially or simultaneously), the patient may be diagnosed with
SLE: (a) a red rash over cheeks and the bridge of the nose (malar
rash); (b) a red, scaly rash on the face, scalp, ears, arms, or
chest (discoid rash);(c) an unusual reaction to the sun
(photosensitivity); (d) small sores (oral ulcers) on the moist
lining of the nose or mouth; (e) arthritis characterized by
tenderness, swelling or fluid in two or more peripheral joints;
(f) documented pleuritis or pericarditis; (g) excessive protein
and/or cellular casts in the urine; (h) seizures and/or psychosis
(not accounted for by drug reactions or identified metabolic
disorders); (I) a decrease in the number of red and white blood
cells or platelets; (j) immunologic disorder (blood test
indicates positive LE cell preparation, anti-DNA, positive
anti-Sm or false positive syphilis test); (k) positive ANA blood
test.
The exact cause of lupus is not known, though there is likely an
interaction between multiple susceptibility genes and
environmental elements. Wallace (1995) believes that of those who
carry lupus genes, only 10% will ever develop the disease. SLE is
a serious, chronic disease, and the management of the illness is
a complex task involving a number of medical decisions.
Incidence/Prevalence:
Wallace (1995) stated that surveys indicate an incidence of
between 1.8 and 7.6 per 100,000 population (new cases per year)
in the United States, that 80% of those afflicted are diagnosed
between the ages of 15 and 45, and close to 90% of those are
women. Hochberg (1997) wrote that the overall prevalence of SLE
in the U.S. has been reported to range between 14.6 and 50.8
cases per 100,000 persons. Studies vary widely over time, place,
population, and method of ascertaining cases. Data suggests that
the prevalence of SLE in the U.S. may be greater than has been
previously reported.
Estimated dollar cost to public health:
In a major study, Hoffman, Rice, and Sung (1996) determined that
as of 1990 there were more than 90 million Americans living with
chronic conditions. They found that the annual cost in 1990
amounted to $659 billion. This included $459 billion for direct
health care costs and $234 billion in indirect costs to society,
including loss of work time and early death. There are 1.5
million lupus patients in the U.S., by conservative estimate. If
they incur an equivalent portion of the health care costs, then
the total cost of the disease (both direct and indirect) would be
approximately $11 billion per year.
Morbidity and mortality:
In their review of the diagnosis and management of SLE, Boumpas
et al. (1995) reported 5-year survival rates of 90% or more and
10-year survival rates of more than 80%. More than 90% of
patients with SLE die from one of five causes: complication of
kidney disease, infections, central nervous system lupus, blood
clots, or cardiovascular complications. Deaths from lupus tend to
occur either early in the course of the disease, among those who
have active aggressive lupus and do not respond well to
treatment, or after 15 to 20 years from continuously active
inflammation or complications of therapy (Wallace, 1995).
Medical costs which could be offset by psychological
interventions:
In recent years, numerous researchers have noted that SLE carries
with it major components that are psychological in nature. There
is considerable evidence that patients with SLE are likely to
experience psychological dysfunction, especially related to
depression. This is an area where psychologists can be
particularly effective with patient education. Several studies
have shown that patient education programs can reduce health care
costs from 10% to 20%, saving up to $2.50 in medical costs for
every $1.00 spent on education programs.
New treatments and breakthroughs in this disease/condition:
New drugs that hold the promise of greater effectiveness and
fewer side effects are being developed and tested. The
possibility of reconstructing the immune system by bone marrow
transplantation is being explored. And the National Institutes of
Health announced that researchers have localized a gene, on the
long arm of human chromosome 1, that predisposes people to SLE
(Ben-Ari, 1997). Continuing to identify genes for lupus will
provide new insights about why people get the disease and should
aid the development of new treatments and/or preventive measures.
Marketing plan for psychologists to include this area of
expertise in their practice:
The American Psychological Association (1995) notes that 63% of
adults say they would prefer to see a physician who works with a
psychologist. Many physicians who treat lupus are already seeking
a multi-disciplinary treatment team approach. Psychologists who
wish to work with SLE patients should be prepared to help them
reduce stress, better their sleeping habits, and increase their
social support, possibly through the use of group therapy. They
should utilize education programs that teach proper diet and
exercise, chronic pain management, and effective coping skills.
They should approach this field using a targeted, behavioral,
health psychology approach rather than with the idea of doing
long-term psychotherapy.
Perhaps the single most important thing that psychologists can do
to market their skills in this area is to carefully study the
literature on SLE. Armed with the information about the disease
itself and the areas in which psychologists may be of assistance,
they will be better prepared to "sell" the idea of a
multi-discipline approach to physicians who treat lupus.
References:
Ben-Ari, A. (1997). Researchers locate lupus gene on chromosome 1
[On-line]. Available:
http://www.nih.gov/news/pr/feb97/niams-19.htm
Boumpas, D. T., Austin, H. A., Fessler, B. J., Balow, J. E.,
Klippel, J. H., & Lockshin, M. D. (1995). Systemic lupus
erythematosus: Emerging concepts. Annals of Internal Medicine,
122, 940-50.
Hochberg, M. C. (1997). The epidemiology of systemic lupus
erythematosus. In D. J. Wallace, & B. H. Hahn (Eds.), Dubois'
lupus erythematosus (pp. 49-65). Baltimore: Williams &
Wilkins.
Hoffman, C., Rice, D., Sung, H. (1996). Persons with chronic
conditions: Their prevalence and costs. The Journal of the
American Medical Association, 276, 1473-1479.
Kotzin, B. L. (1993). Tracking and treating lupus--the great
impostor. Medical/Scientific Update [On-line], 9(4). Available:
http://www.njc.org/MSU/09n4MSU_Lupus.html
Tan, E. M., Cohen, A. S., Fries, J. F., Masi, A. T., McShane, D.
J., Rothfield, N. F., Schaller, J. G., Talal, N., &
Winchester, R. J. (1982). The 1982 revised criteria for the
classification of systemic lupus erythematosus. Arthritis &
Rheumatism, 25(11), 1271-1277.
Wallace, D. J. (1995). The lupus book: A guide for patients and
their families. New York: Oxford University Press.
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