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Improving Outcomes in Lupus
What problem was studied?
The medical management of systemic lupus erythematosus (SLE or lupus) has
improved but the disease can still have a significant impact on health status
and quality of life. Previous research has shown that poorer outcomes are linked
with various psychosocial factors, including psychological distress, inadequate
social support and low self-efficacy (confidence in one’s ability to manage the
disease). These factors can potentially be improved through various types of
non-pharmacologic programs but few studies have been done to test these
approaches with people with lupus. Thus, independent research teams in Boston
and Pittsburgh developed and tested two different programs to improve
psychosocial factors and outcomes in persons with lupus.
Arthritis
Foundation-funded researchers involved in the studies: Elizabeth W. Karlson, MD,
supported by an Arthritis Foundation Postdoctoral Fellowship and Investigator
Award, Brigham and Women’s Hospital, Boston, MA; and Carol M. Greco, PhD,
Arthritis Foundation Clinical Science grant recipient, University of Pittsburgh
What was done in the studies?
The Boston researchers developed a psychoeducational program aimed at improving
partner support, self-efficacy and problem-solving skills. A study group of 122
patients with lupus and their partners were randomly assigned to the
experimental program or to a control group. The experimental group participants
and their partners met with a nurse educator for a 30-45 minute session
following a regular medical visit. The nurse used techniques to help the
patients improve their self-efficacy and to improve the pair’s mutual
understanding and communication about lupus self-management. Each couple also
worked through a problem-solving approach to identify problems related to lupus,
to generate solutions and develop a plan to address their priority issues. The
visit was followed by monthly telephone calls for six months to encourage
problem-solving and communication skills.
The control group participated in a 45-minute
meeting during which they received a lupus pamphlet and viewed a videotape about
one woman’s experience with lupus. This was followed by a question and answer
period with the nurse educator. The persons with lupus in the control group
received 5 very brief monthly telephone calls, solely for data collection
purposes.
The Pittsburgh study tested the effects of a
stress-reduction program on pain and physical and mental function. Ninety-two
patients with lupus who reported having pain were randomly assigned to one of
three groups: a control group that just received usual medical care, a
“symptom-monitoring” control group that attended 6 sessions with a therapist to
talk about their symptoms and current stressors, or the experimental group. The
experimental program consisted of six sessions with a psychologist who provided
biofeedback, muscle relaxation and cognitive-behavioral and stress management
training. Homework assignments included practicing the relaxation techniques and
completing worksheets on daily stresses and problem-solving.
What were the study results?
Compared to the control group, the Boston experimental group participants had
many significant improvements—at 6 months, higher scores for couple
communication and problem-solving, and at 1 year, improved social support,
self-efficacy, communication, fatigue and physical and mental health.
The Pittsburgh stress-reduction program was also
successful—at 3 months, compared to the two control groups, experimental group
participants had significant improvements in pain, fatigue, stress and
self-efficacy. Improved psychological function was maintained at 9 months. Notes
Dr. Greco, “When the participants practiced the skills taught in this study,
most of them had eye-opening experiences such as substantial pain reduction and
noticeable increases in energy. This helped them to realize that, even though
lupus can be very unpredictable, there is a lot that they can do to feel and
function better.”
What’s the relevance to people with lupus?
These studies demonstrate the value of programs that supplement usual medical
care. Regarding the Boston study, Dr. Karlson comments, “This nurse-delivered
educational intervention has the potential to reduce health problems and costs
in a debilitating and management-intensive chronic disease.” Dr. Greco gives
this advice to people with lupus, “Even on your toughest days when you feel like
lupus has you in a tight and painful grip, try to step back and be flexible.
Take charge of the things you can control, like your attitude and the way you
use your time. Keep a "bag of tricks" for managing pain and stress, and use it.
A psychologist or counselor who specializes in pain management, stress
reduction, and chronic illness can help you learn the skills. Finding friends or
relatives who encourage you to practice your relaxation and stress reduction
techniques, or even practice with you, can also be very helpful.”
Sources: Arthritis and Rheumatism June
2004 & Arthritis and Rheumatism (Arthritis Care & Research) August
15, 2004
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15188360
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15334437
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