LifeGuide
[Treatment Horizons]
A new study explores chaos as a barrier to care
by Chael Needle
Common barriers to care—housing, childcare, transportation, for instance—are often dismantled with the help of case managers, says Dr. Mitchell D. Wong, MD, PhD, an assistant professor of general internal medicine and health services research at the David Geffen School of Medicine at UCLA, “...but when you count all the number of things that people have to deal with in their daily lives, it’s not just the fact that they have to find housing or transportation but it’s the cumulative effect of how that influences their lives.” This “cumulative effect” might manifest itself as chaos, a life disorganized or peppered with too many unexpected events.
A new study, published last month in the Journal of General Internal Medicine by Dr. Wong and his colleagues, looks into the relationship between chaos and care. The amount of effort necessary for patients to arrive at their appointments on time or keep their dosing schedule can be burdensome, and can even interrupt regular medical care, for anyone with a chronic disease, he points out. HIV may take even more self-care than most other chronic diseases, he adds, especially when you factor in that many HIV patients are disadvantaged, economically and otherwise. In this study, “[w]e were trying to look beyond the fact that people have barriers, into how they manage those barriers.”
The chaos of daily life and its management as a possible factor in an individual’s healthcare is a problem that has been evolving over the past ten or more years, ever since Catherine Sarkisian, MD, shared with Wong, her spouse, how she came to understand why a patient was perhaps having difficulty staying on top of her regimen of care—managing the travails of single parenthood, poverty, a brother recently released from jail suddenly on her doorstep seemed to be interrupting any chance of regularity. And the experiences resonated with his own observations of patients. The inquiry into the relationship between chaos and healthcare utilization was framed in this study by the care of HIV-positive patients as it related to socioeconomic status, social supports, and stressors.
The study, authored by Wong, Sarkisian, and others, recruited about 220 low-income HIV-positive patients; forty-five percent were African-American, forty percent were Latino, and twenty percent were women. Roughly one-third did not graduate from high school, while approximately seventy-five percent had a history of homelessness and fifty percent had used drugs in the previous thirty days. In addition, forty-five percent were uninsured and three-fourths of the participants had one or more unmet social-service needs. In the six months prior to the study, eighty-three percent had seen a physician for HIV care at least twice, forty-six percent missed two or more visits, and one-third had gone to a hospital emergency room at least once. Participants were asked to measure the chaos in their lives by answering a series of fifteen questions.
Wong reminds that the study participant group was small, and rather select, so it remains unclear why some people have more chaotic and disorganized lives than others. “We did find that people who have a spouse, or a partner, were less likely to have chaos in their lives. I think that that would make sense—that people who have a person they can rely upon can help them be more organized, but also there’s an extra person who can help ensure you’re doing the things that you’re supposed to do
for yourself.”
The study also found that participants with at least one unmet social-service need scored highest on the chaos scale. Patients in the higher ranges of the scale 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 enrollment. Lower mental health status was also strongly associated with increased chaos.
As this current study assessed chaos only in a general way, a future line of inquiry will explore how different types of chaos may affect different parts of individuals’ lives—home life, work life, and other parts of their daily lives. Another aspect will include looking at how chaos affects the lives of those who have chronic illnesses other than HIV. “The other piece is to look and see whether it affects other patients with HIV, including people who come from higher socioeconomic backgrounds and people who do not have the additional economic barriers to care.”
About the practical applications of these findings, Dr. Wong says: “We’re a little bit far off from thinking about interventions, but I think it does give us a different way to think about how we might intervene and get patients into care and keep them in care.”
Chael Needle wrote about integrase-inhibitor candidate, Isentress, in the September issue.
October 2007
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