 |

Volume 11 - February, 1999
|
|
|
THE PITTSBURGH LUPUS PATIENT REGISTRY NEWSLETTER |
WELCOME
This is the eleventh edition of our newsletter, which is provided to all of the participants of the Pittsburgh Lupus Patient Registry. Please help us to keep in touch with you.
We can be reached by:
1. Phone at (412) 692-4343
2. FAX at (412) 692-4350
3. E-mail: rairie@msx.dept-med.pitt.edu
Also, you can drop us a line with your change of address or with suggestions for future newsletters.
Send your correspondence to:
University of Pittsburgh
3471 5th Avenue
502 Kaufmann Building
Pittsburgh, PA 15213
ATTN: Joan Rairie, BSN
This newsletter was produced with the help of a grant from:
The Lupus Foundation of America, Inc.
Western Pennsylvania Chapter
for information call (412) 261-5886
|
|
 |
1
|
TROUBLED BY INCREASING HEALTH CARE COSTS? |
|
There are approximately 700 SLE patients from three nations (U.S., U.K., and Canada) that are enrolled in a Health Care Cost Study.
Some preliminary results have shown that Canadians reported significantly superior health status. There was no real difference
in patient satisfaction. Overall annual resource utilization did not vary significantly, but the mean annual per patient expenditure was highest in Canada.
The main differences that were observed were that Canadians saw more specialists, Canadians and Americans were more frequent users of the emergency room, and
Americans had more laboratory and imaging procedures. Canadians had higher hospital costs. Overall the annual use of the health care system did not vary between the countries.
|
For those of you participating, we want to remind you to send back your questionnaires. If you have misplaced them, please let us know, we'll send you another. If you need help
completing them, we will be happy to talk to you. Your participation is necessary for us to compare costs of health care provided to patients with lupus in the U.S., U.K., and Canada.
We are trying to immprove the care we provide to our patients, but we need your input!
|
 |
2
|
DO YOU FEEL MOODY AND HAVE HOT FLASHES DUE TO MENOPAUSE AND SLE? |
|
After menopause, women may have hot flashes, mood swings, increased risk of osteoporosis (risk of soft bones) and coronary artery disease (clogged arteries of the heart.) Hormone
replacement therapy may be even more important to women with SLE since the risk of premature osteoporosis and coronary artery disease is greater than that of most women without
SLE. The University of Pittsburgh, Division of Rheumatology, is one of many centers across the country conducting a research study to determine the safety of hormones(estrogen replacement therapy)
in lupus. This research study is sponsored by the National Institute of Health. This is a one year
|
research study which consists of 8 visits, including a physical exam, laboratory testing, and questionnaires regarding your health. To be eligible, you must be menopausal and not currently on estrogen
replacement therapy. You will not be charged for visits or laboratory testing. You will be reimbursed for parking expenses. If you feel you are eligible, or would like further information, please call:
Joan Rairie,
Study Coordinator
(412) 692-4348
|
 |
3
|
DO YOU FEEL WORSE AT CERTAIN TIMES DURING THE MENSTRUAL CYCLE?
|
|
Many women state thath their lupus symptoms get worse when they are menstruating. This increase in symptoms may be related to hormone levels.
We are conducting a research study examining menstrual cycling and disease activity. The study is funded by the National Institute of Health (NIH) and will take place at the University of Pittsburgh Medical Center.
This research study will determine whether hormone levels (estrogen and progesterone) are different in women with lupus compared to women of similar age without lupus. To be eligible for the study, you must be menstruating
and be 18-40 years of age. You do not have to experience changes in lupus activity during your cycles to enter. We welcome everyone
|
All participants will have a physical examination at entry and one additional visit over a 3 month period. All participants will be paid $100.00 and parking expenses will be reimbursed. Participants are required to provide saliva samples
(to determine hormone levels) over several menstrual cycles. We would like to get 100 women to participate in this study over the next 4 years.
If you are interested in participating, call:
(412) 692-4343
|
 |
4
|
MANAGING STRESS AND PAIN OF SLE
|
|
Pain, fatigue, and the unpredictability of SLE symptoms can have a major impact on health and quality of life. The University of Pittsburgh is conducting a
research study to determine wheter pain and stress management training help people with SLE to reduce pain, distress, and disease activity. This
treatment outcome study is funded by the National Arthritis Foundation and will take place at the Division of Rheumatology and Clinical Immunology and the Pain
evaluation and Treatment Institute.
|
To be eligible for the study you must be between 18-65 years old, have SLE< and experience pain several times each week. All participants will undergo an initial physical examiniation, and 2 follow-up
examiniations 3 and 9 months later. Participants will be assigned to attend 6 weekly treatment sessions, or they will only participate in the examinations. Parking costs for treatment sessions will be
reimbursed and participants will be paid $20 for each of the 2 follow-up examinations. For more information contact:
Jill Smith (412) 578-3115
|
 |
5
|
|
|