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Duke, UNC to Launch Six-State Study of HIV Patients

Duke, UNC to Launch Six-State Study of HIV Patients
Duke, UNC to Launch Six-State Study of HIV Patients


Duke Health News Duke Health News

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

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

"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

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