PATIENT PERCEIVED HEALTH STATUS IN SLE
Study Rationale:
As most patients will
know, we have been asking you to complete a "Health Status" questionnaire
at least once a year at your Clinic visit. This work is being done
as part of the development of outcome measures in SLE. As mentioned
in our newsletter, it is important that physicians and researchers have
accurate ways to measure disease activity and the effect of different treatments
on the disease. Two physician-derived measures have been developed
to measure damage (permanent changes) and disease activity. A third
measure "Patient-perceived Health Status" has been recognized as a separate,
distinct measure of the effects of SLE." In other words the
patients own assessment of how their disease affects their life can actually
differ from the physicians assessment of disease status. Patient
perceived health status is therefore a very important third measure of
SLE outcome. The questionnaire that we use is called the "SF36" and
was developed as a health status measure for use in many conditions.
It has been widely accepted as the best instrument for SLE and is used
internationally in lupus research.
Study Design:
With partial financial
support from the Toronto Hospital Womens Health Initiative, we are now
expanding our studies in Health Status to include comparison of results
from SLE patients with normal healthy controls. We are asking patients
to help us develop a control population by asking them to provide the names
of acquaintances (non-relatives) who are in good health and are within
5 years of age of themselves. We are then asking the acquaintance
to complete the SF36 Health Status questionnaire. By using this approach,
we will be able to obtain a normal control population with otherwise similar
life styles to the patient. Again, all information received is maintained
confidentially by the use of study numbers. In addition, we
plan to compare the results of the SLE population with other rheumatic
diseases such as psoriatic arthritis. The information will have the
potential to improve clinical assessment and the development of treatment
strategies aimed at enhancing quality of life.
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