HIV patients studied

Study finds caregivers often postpone seeking treatment for themselves

A nationwide study of HIV-positive patients led by Michael D. Stein of Brown University found 14 percent of women and 8 percent of men delayed their own medical treatment because they were caring for others.

PROVIDENCE, R.I. — A nationwide study of HIV-positive patients found primary caregivers often postpone their own medical treatment because of the competing needs of persons for whom they care – information that is particularly significant for women, who have traditionally filled the caregiver role.

Fourteen percent of women and 8 percent of men delayed their own medical treatment for caregiving reasons, according to the study led by Michael D. Stein, associate professor of medicine at the Brown University School of Medicine, who is based in the Division of General Medicine at Rhode Island Hospital.

“There is an untested notion that women who take care of children use the health care system differently,” said Stein. “This is the first study that shows caregiving disrupts one’s own care.”

The finding spotlights the need for support services, such as child care, in medical settings, according to Stein. The opportunity for timely initiation of anti-retroviral therapy in HIV-positive patients, which prevents viral replication, could be lost if care is delayed, he said.

Researchers studied patients 18 years or older, with a known HIV infection, from a sampling of geographical areas throughout the United States. They used a database of information on 2,864 HIV-positive adults compiled between January 1996 and April 1997, called the HIV Cost and Services Utilization Study.

Study participants were asked, “In the last 6 months, have you ever put off going to the doctor for HIV care because taking care of someone else was more important to you?” A profile of those who responded in the affirmative emerged. They were typically women in the early stages of the disease who had young children and little or no private health insurance:

• The odds were 1.7 times greater for women than for men to put off care;
  
  
• Patients with a child younger than 17 in the household were 1.8 times more likely to delay care;
  
  
• Patients without health insurance and those with public insurance were 2.2 times more likely to delay care than privately insured patients;
  
  
• Healthier patients – those with CD4 cell counts above 500 – were 2 times as likely as sicker patients – those with CD4 cell below 50 – to delay care.

More than half of American women with HIV or AIDS have children younger than 17 for whom they are primary providers of economic and social support. Caregivers must be asked about their own needs and provided with services that allow them to avoid delay in seeking their own medical care, said Stein.

However, more research needs to be done to determine whether delay in care for HIV-positive patients has an effect on their health, said Stein. Such a finding in HIV-positive patients also invites the question whether delay occurs among patients with other diseases, he added.

The study is published in the July issue of the American Journal of Public Health. The HIV Cost and Services Study was conducted under an agreement between RAND and the Agency for Health Care Policy and Research. Additional support for this study was provided by the Health Resources and Services Administration, the National Institute of Mental Health, the National Institute on Drug Abuse, the National Institutes of Health Office of Research on Minority Health through the National Institute for Dental Research, the Robert Wood Johnson Foundation, Merck and Co., Glaxo-Wellcome, and the National Institute on Aging.