DURHAM, N.C. – Researchers from Duke University and the University of North Carolina-Chapel Hill hope to better understand the connection between life stress and the pursuit of health care through a $2.9 million study of HIV patients in six Southern states.
The study, funded primarily by the National Institute of Mental Health with support from the National Institute of Drug Abuse and the National Institute of Nursing Research, will follow 1,000 people over three years, tracking their health, attitudes and treatment patterns.
The data may lead to new approaches to breaking down barriers that hinder efforts to reduce the spread of HIV in the South and the mortality rate, according to Kate Whetten-Goldstein, assistant professor at Duke's Center for Health Policy, Law and Management and primary investigator for the study.
Researchers will recruit study participants from 11 infectious disease clinics in six states, interviewing them yearly to find out about their health status, compliance with medical treatment plans and how they cope with their disease.
Whetten-Goldstein said the study will follow people in the block of Southern states that buck the national trends of slowing HIV spread and mortality. These are rural states where at least 70 percent of the HIV positive people are African American and 30 percent are women.
"The country is moving in one direction, with the epidemic slowing, but we continue to get spread of infection in these six states – North Carolina, South Carolina, Alabama, Mississippi, Louisiana, Georgia," said Whetten-Goldstein, who is simultaneously conducting four other studies related to HIV infection and treatment in rural areas. "We'll be gathering information on how long people have had the disease, the stage of their disease, how they use health systems, whether they have support systems and how they cope."
She suspects a cascade of differences between characteristics of urban and rural HIV-positive patients contributes to what she calls "the new epidemic." Nationally, people who are now HIV-positive are more likely to be poor, to use different kinds of drugs, to contract HIV either through drug use or heterosexual transmission and to be less educated than HIV-positive patients infected some years ago.
While new HIV patients in cities and rural areas are similar in economic status, race and gender, case studies Whetten-Goldstein has chronicled since 1996 indicate the rural patients are less likely to have support systems of people who know about their HIV status and are more isolated by their perceived need for secrecy about their infection.
These factors that may correlate with poor compliance with medication and treatment plans, including "drug holidays" and missing vital doctor's visits.
"In rural areas, on top of those demographic changes is a difference in dealing with the community itself, the issues of confidentiality and trust, with overcoming structural barriers of distance," she said. "While not letting anyone in the community or family know that you're HIV-positive, how do you get your medications or get to the clinic?"
In addition, Whetten-Goldstein said she found an alarming rate of childhood abuse in the rural HIV-positive patients involved in her case studies. She and her colleague on the new study, UNC medical sociologist Jane Leserman, think that the psychological impact of childhood abuse may play a role in HIV transmission, the patients' method of coping and ultimately, in their rate of declining health.
For the past 10 years, Leserman has studied the psychiatric, psychosocial, biological and clinical aspects of HIV infection. Her work has shown a connection between high stress, coping by denial and low social support in HIV-positive men and the decrease in their immune status and faster progression of disease. She also has found a correlation between poor health and childhood trauma among patients with gastrointestinal disorders.
"I think we can apply some of these findings in this larger, more representative population to find out more about the role of coping, stress and social support," Leserman said. "We're also interested in how some of these psychosocial aspects may affect adherence to medications. Ultimately, we'll be able to describe what the epidemic looks like in the South."
The researchers think data from this study's interviews could document differences in how rural and urban patients create support networks, and whether childhood abuse is a widespread characteristic in the rural patients, data that could spur health policy changes.
"It may point to places where a health system can intervene by setting up different ways of getting services to people, of addressing identified issues with patients that might help them," Whetten-Goldstein said. "If it is true that trauma, both childhood and current, plays a role in the spread and progress of this disease, it means that a model of care that could keep people adherent to their clinic visits and their medications would include mental health services," she said.
The research team will work on the project for five years, the first year being devoted to training, honing survey instruments and setting up clinic contacts, the next three for gathering patient information and the final year for analysis of the data.
Others working on the study are Dr. Marvin Swartz, a psychiatrist; statistician Dalene Stangl; and Dr. John Bartlett and Dr. Nathan Thielman, infectious disease specialists, all of Duke.