Quality of Life Evaluation in Chronic Lichen Sclerosus for Improved Medical Care
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QUALITY OF LIFE EVALUATION IN CHRONIC LICHEN SCLEROSUS FOR IMPROVED MEDICAL CARE RUKMINIRAJAGOPALAN, DRPH, MBA, RN Glaxo Wellcome Inc., Research Triangle Park, North Carolina
ROGERT. ANDERSON, RID,
ELIZABETH F. SHERERTZ, MD
AND
Wake Forest University School of Medicine, Winston-Salem, North Carolina
LIBBYEDWARDS, MD Carolina Medical Center, Charlotte, North Carolina
Chronic vulvar lichen sclerosus (LS)is most often seen in women over 50. The exact cause of LS is unknown. Reports of family members with a history of LS make one suspect the possibility of a genetic link. There is also the possibility that it has an autoimmune component. The occurrence and prevalence rates are possibly vague or understated because women do not come forward and talk about their disease until and unless the disease activity becomes intolerable. The extent of quality of life (QOL) impact with this condition, however, has not been systematically assessed, and is known largely from anecdotal reports from patients. The dermatology-specific quality of life (DSQL) instrument that has been validated in several skin diseases such as acne, conract dermatitis, and psoriasis, has been adapted to effectively evaluate the impact of LS on the women’s quality of life. The severity of the disease as measured by the physician is very well correlated with the quality of life scores as evaluated by the subjects. The scales of the instrument were shown to be highly reliable. It is concluded that the DSQL instrument can effectively evaluate the impact of chronic vulvar lichen sclerosus, its treatment, and outcomes from medical care. Key Words: Quality o f life; Vulvar lichen sclerosus
INTRODUCTION CHRONIC VULVAR DERMATOSES such as that due to lichen sclerosus (formerly known as lichen sclerosus et atrophicus) impact the quality of life of women to a great extent. Bellman (1) has performed a thorough Presented at the DIA Fifth Annual Symposium ‘‘Quality of Life Evaluation,” April 5-7, 1998, Hilton Head, South Carolina. Reprint address: Rukrmni Rajagopalan, DrPH, MBA, RN, Glaxo Dermatology, A division of Glaxo Wellcome Inc., Five Moore Drive, Research Triangle Park, North Carolina.
literature search from 1966to the present day and found no appreciable research literature on QOL assessment for chronic vulvar dermatoses. Existing QOL instruments for dermatological conditions such as the Dermatology Life Quality Index (2) are not sufficient to measure the sensitive features inherent in chronic vulvar dermatoses. The dermatology-specific quality of life instrument was adapted to produce a quality of life instrument that can effectively measure such impact and monitor progress from treatment. Lichen sclerosus is more common in women than men. It can occur at any age;
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R. Rajagopalan, R. T. Anderson, E. I;. Sheretz, and L. Edwards
in a study among 350 women with lichen sclerosus, the onset of the disease was during childhood
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