UCSF

DISSERTATION ABSTRACT

Cohort Study of Persons with Human T-cell Lymphotropic Virus

Deborah A. DeVita

Background: The HTLV Outcomes Study (HOST) is a longitudinal prospective study of 155 HTLV-I, 387 HTLV-II and 799 HTLV seronegative persons enrolled in 1990-92 following attempted blood donation at five blood centers in the United States. The study has completed eight subject visits over 18 years and has data from health questionnaires, neurologic and lymph node examinations, and phlebotomy.

Objectives: To familiarize healthcare workers with the literature pertaining to the biological properties and the epidemiology of the HTLV viruses and present clinical and statistical information about persons in a study of HTLV.

Methods: An existing data set from HOST is used for this study. The original aims of HOST were to better define the disease outcomes and the risk factors associated with HTLV-I and -II infection, and to assess the prevalence and incidence of adult T-cell leukemia (ATL) and HTLV-associated myelopathy (HAM). The current study has three chapters. The first chapter reviews the HTLV literature to present the public health relevance and counseling recommendations for HTLV to healthcare providers. The second chapter calculates odds ratios with generalized estimated equations to analyze fixed and time-varying predictors of HOST participation. The third chapter provides some insights about the concerns and fears of persons living with HTLV.

Results: With millions of people estimated to be infected by HTLV worldwide and a lack of effective therapy, health care provider knowledge of the natural history of the virus is vital to secondary and tertiary prevention efforts.

The main findings of chapter three were that persons with higher incomes and more education were more likely to participate in study visits and men and persons of Black and other race/ethnicity were less likely to participate. In the third chapter, a majority of subjects reported specific concerns such as fear of future progression to HTLV-related disease and fear of transmitting HTLV to others.

Discussion: The clinical importance of HTLV-I and HTLV-II has been overlooked by nurses and other health care workers because it is fairly obscure, and due to confusion between HTLV and human immunodeficiency virus (HIV). While studies have shown that blood donors as a group have higher socioeconomic status, the persistent and independent influence of race/ethnicity, education and income demonstrates the continued and urgent need to develop and test strategies to encourage participation by under-represented groups. HTLV health care providers need to inquire about the fears and concerns of their patients.