Personal Chaos in HIV Patients’ Lives May Be a Barrier to Regular Medical Care, UCLA Study Shows
Unstable and unpredictable lifestyles are significant factors in determining access to health care among low-income HIV-positive people, a new UCLA study has found.
The study, to be published in the September issue of the Journal of General Internal Medicine, found that when HIV patients lead chaotic lives — meaning they are disorganized or experience too many unexpected events — that chaos can act as a barrier to regular medical care. The researchers also developed a new scale to gauge the level of chaos in an adult's life.
The findings suggest a possible new alternative to help ensure that low-income patients get the care they need, said the study's lead author, Dr. Mitchell Wong, an assistant professor of general internal medicine and health services research at the David Geffen School of Medicine at UCLA.
"Many people have barriers to care, such as problems with transportation, housing, child care and health insurance. Traditionally, we look to solve these problems with case managers who can help reduce these barriers," Wong said. "But there's a whole potential other mechanism which might be happening — that people are just having trouble managing and organizing their lives. I think many of us take for granted the support mechanisms that we have, but many people who are living in poverty don't have that support network. They don't have that buffer zone to cope with the unexpected things. Perhaps enhancing stability and organization in people's lives can also help them get the regular care that they need."
Some 220 low-income HIV-positive patients participated in the study. Of those, 45 percent were African American, 40 percent were Latino and 20 percent were women. About one-third did not graduate from high school, approximately 75 percent had a history of homelessness and half had used drugs in the previous 30 days. In addition, 45 percent were uninsured and 75 percent had one or more unmet social-service need. In the six months prior to the study, 83 percent had seen a physician for HIV care at least twice, 46 percent missed two or more visits, and one-third had gone to a hospital emergency room at least once.
In developing the new scale to measure chaos in adults' lives, the researchers took as their model the 15-item Confusion, Hubbub, and Order Scale (CHAOS), designed for parents to assess chaos affecting children's home lives. The researchers changed some questions in the CHAOS scale to reflect a person's life in general and whittled the assessment down to six simple statements designed to key in on the level of chaos in patients' lives. These statements had a five-point response ranging from "strongly agree" to "strongly disagree."
The statements were:
· My life is organized.
· My life is unstable.
· My routine is the same from week to week.
· My daily activities from week to week are unpredictable.
· Keeping a schedule is difficult for me.
· I do not like to make appointments too far in advance because I do not know what might come up.
The researchers found that those patients who did not have spouses or partners and
those with at least one unmet social-service need, such as transportation or housing, scored highest on the chaos scale. They also found that patients with more chaos in their lives were less likely to have had two or more outpatient HIV care visits and were more likely to have missed two or more visits in the six months prior to enrolling in the study. These patients also had lower mental health status, both when they enrolled in the survey and at follow-up. The researchers, however, did not find an association between life chaos and emergency department visits or physical health status.
In addition to Wong, researchers included Catherine Sarkisian, Janni Kinsler and William Cunningham of UCLA, and Cynthia Davis of Charles Drew University of Medicine and Science in Los Angeles.
The Health Resources and Services Administration, the National Institute on Aging, the Pfizer Foundation, the National Center on Minority Health and Health Disparities, and the National Institute of Mental Health funded the study.