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Measuring
Quality of Life in Patients with Hereditary
Kidney Disease
Newswise — A commonly used questionnaire
that measures quality of life is not
sensitive enough to pick up mental and
physical problems experienced by patients
with autosomal dominant polycystic kidney
disease (ADPKD), according to a study
appearing in an upcoming issue of the
Clinical Journal of the American Society
Nephrology (CJASN).
Findings indicate that patients with this
condition, (the most common form of
hereditary kidney disease) need better tests
to adequately measure quality of life.
If the kidneys and liver due to the growth of
cysts, causes pain, shortness of breath,
fatigue, and decreased appetite.
Researchers and physicians do not yet have a
clear measure of the impact of ADPKD on
patients’ quality of life.
A team of investigators recently evaluated
the effectiveness of a quality of life
questionnaire for assessing the well being
of ADPKD patients.
The SF-36 questionnaire is one of the most
commonly used questionnaires in medicine.
The test addresses the physical and mental
health of patients with chronic illness and
is standardized for the general US
population.
Arlene Chapman, MD, of the Emory University
School of Medicine in Atlanta, Georgia, and
her colleagues analyzed SF-36 test results
of 152 adults with ADPKD and compared them
with results from people in the general
population.
Because ADPKD is associated with significant
physical ailments, the researchers
hypothesized that ADPKD patients would
report lower physical and mental quality of
life scores on the SF-36 questionnaire than
the general population.
The researchers found that there were links
between certain patient characteristics and
physical scores on the SF-36 test.
Age, body mass index, pulse pressure, pain
medication use, and education level were
found to play a role in patients’ physical
well being.
However, ADPKD patients had physical and
mental scores that were similar to those of
the general population.
“The results of this study may reflect that
ADPKD patients are generally very motivated
to cope with their disease.
However,
these same results raise the question of
whether the SF-36 is an appropriate tool to
evaluate quality of life in pre-ESRD chronic
kidney disease populations such as those
with ADPKD,” the authors wrote.
According to Dr. Chapman, the SF-36
questionnaire is relatively insensitive in
determining both mental and physical well
being in ADPKD individuals and “more precise
validated questionnaires are needed in ADPKD
patients prior to initiation of renal
replacement therapy to determine the
potential benefits of novel therapeutic
interventions.”
This study was supported by the General
Clinical Research Center Grant MO1-RR00039
for the Division of Research Resources,
National Institutes of Health, and the
Polycystic Kidney Disease Foundation.
The authors reported no financial
disclosures.
The article, entitled “Quality of Life in
Autosomal Dominant Polycystic Kidney Disease
Patients not yet on Dialysis” will appear
online at
http://cjasn.asnjournals.org/ on
Wednesday, March 4, 2009, doi
10.2215/CJN.02410508.
Founded in 1966, the American Society of
Nephrology (ASN) is the world’s largest
professional society devoted to the study of
kidney disease.
Comprised of 11,000 physicians and
scientists, ASN continues to promote expert
patient care, to advance medical research,
and to educate the renal community.
ASN also informs policymakers about issues
of importance to kidney doctors and their
patients.
ASN funds research, and through its
world-renowned meetings and first-class
publications, disseminates information and
educational tools that empower physicians.