One in Four U.S. HIV Patients Don’t Stay in Care

[emeraldize]

One in Four U.S. HIV Patients Don’t Stay in Care
Released: 3/6/2012 11:25 AM EST
Source: Perelman School of Medicine at the University of Pennsylvania
FOR IMMEDIATE RELEASE
March 6, 2012
One in Four U.S. HIV Patients Don’t Stay in Care, Penn Study Shows

More Than Half of Patients Found to Have Long Gaps in Between Appointments
Newswise — PHILADELPHIA – Only about 75 percent of HIV/AIDS patients in the United States remain in care consistently, according to new research from the Perelman School of Medicine at the University of Pennsylvania published online this week in AIDS. The study of patients across the United States is the first to provide a comprehensive national estimate of HIV care retention and information about patients who are most likely to continue their treatment over time.

“Helping patients with HIV stay in care is a key way to reduce their chances of getting sick from their disease and prevent the spread of HIV in the community. Our findings show that too many patients are falling through the cracks,” says the study’s lead author, Baligh R. Yehia, MD, a fellow in the division of Infectious Disease and the Health Policy Research Program at Penn Medicine. “The benefits of keeping patients in care are clear both for patients and the community at large, and it may even result in decreased health care costs by preventing unnecessary hospitalization for an acute illness.”

The researchers studied 17,425 adult patients cared for at 12 clinics within the HIV Research Network, a consortium that cares for HIV-infected patients across the nation, between 2001 and 2008. Just 42 percent of patients studied had what researchers defined as “no gap” in treatment – intervals of no more than six months in between outpatient visits – over the timeframe studied, while 31 percent had one or more seven- to 12-month gaps in care. Twenty-eight percent appeared to have gone without care for more than a year on one or more occasions. Since there is no gold standard on the best way to measure retention in care, the team used three different measures of retention to examine each patient’s visit record.

Women, white patients, older patients, male patients who were infected via sex with men, and patients who began treatment on Medicare (compared to those on private insurance) were all more likely to remain in care more consistently. Retention was also greater among patients whose CD4 counts – the measure of how advanced the disease is – were very low, at the point associated with AIDS, when they entered care.

The team suggests that their findings may help guide clinicians in assessing which patients are more likely to follow their prescribed visit schedule, and develop intervention strategies to improve their chances of adhering to their care. “Clinicians need to know what barriers to screen for, so our findings help to better define groups of patients who may require extra help to stay on track,” says the study’s senior author and Yehia’s mentor, Kelly Gebo, MD, an associate professor of Medicine at the Johns Hopkins University School of Medicine. Housing, transportation and financial problems, substance abuse and mental illness can all be contributors to problems with care retention, and patients who don’t have symptoms may not believe they’re “sick” enough to require regular visits with their providers.

Yehia also notes that a standardized criteria for determining the appropriate time between visits is needed, since patients who are at various stages in their disease, have other health conditions or certain social circumstances may require unique plans for care – thus making it hard to assess aggregate retention across the entire HIV population. And since patients may switch doctors, move frequently, go to jail or become institutionalized and still receive care during those times, the research team suggests additional studies that track patients across those circumstances, such as research involving data from insurance records.
Questions also remain about how HIV treatment retention may change as time passes during what has become, for many, a chronic condition spanning decades of their lives.

“It’s possible that as time goes by, some patients may become more regular users of care, while others may become complacent and skip appointments,” Yehia says. “We need to better pinpoint times when certain patients may be less likely to remain in treatment and find ways to ensure their continued care.”
In addition to Yehia and Josh Metlay, MD, PhD, also from Penn, other authors of the paper include investigators from Hopkins, Oregon Health and Sciences University, and the Agency for Healthcare Research and Quality.

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Penn Medicine is one of the world's leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation's first medical school) and the University of Pennsylvania Health System, which together form a $4 billion enterprise.
Penn's Perelman School of Medicine is currently ranked #2 in U.S. News & World Report's survey of research-oriented medical schools and among the top 10 schools for primary care. The School is consistently among the nation's top recipients of funding from the National Institutes of Health, with $507.6 million awarded in the 2010 fiscal year.
The University of Pennsylvania Health System's patient care facilities include: The Hospital of the University of Pennsylvania -- recognized as one of the nation's top 10 hospitals by U.S. News & World Report; Penn Presbyterian Medical Center; and Pennsylvania Hospital – the nation's first hospital, founded in 1751. Penn Medicine also includes additional patient care facilities and services throughout the Philadelphia region.
Penn Medicine is committed to improving lives and health through a variety of community-based programs and activities. In fiscal year 2010, Penn Medicine provided $788 million to benefit our community.

[mecch]

When I seroconverted a few years ago, i saw a big cheese ID specialist in my city and was in his care for a few years. Very competent but a couple of his decisions rubbed me the wrong way. One day I was in another city and friend who is HIV+ took me to see his specialist and i really liked him, so I just switched like that. The new specialist told me he didn't need any of my files from the first, I gave him one list of my labs since infection and soon after treatment. 

I never heard squat from the first. No call from the secretary wondering why I didn't make more appointments, etc.

I did wonder if it ever occurred to that office that someone might have fallen off the map treatment wise.

[leatherman]

Women, white patients, older patients, male patients who were infected via sex with men, and patients who began treatment on Medicare (compared to those on private insurance) were all more likely to remain in care more consistently. Retention was also greater among patients whose CD4 counts – the measure of how advanced the disease is – were very low, at the point associated with AIDS, when they entered care.

it's really not surprising to see that people with better access to care remain in care.

Also not surprising to see that people who might have been quite sick (perhaps even to the point of nearly an AIDS-related death) are much more proactive about remaining in care. not only will nearly dying put the fear of god in ya ; but being that sick probably helps in getting assistance and getting better access to care.

[Ann]

I'm pretty sure I remember reading about a study in the UK that had very similar findings. (I looked for it via google, but no luck. I'm probably not using the right key words. Damn hiv-addled brain!)

You would think that the UK would have a better record, considering all hiv care is free, and that's why it stuck in my mind.

They mainly blamed mental health issues, alcohol and/or drug use, incarceration, people in rural areas having difficulty accessing care (travel difficulties) and stigma, if I recall correctly.

It may have been one in five rather than one in four, but like I said, the findings were similar. I just wish I could find the study!

[mecch]

I asked my shrink this question today.
She said, doctors would not normally follow up a missing in action patient.
Then she said, she would have to follow up a MIA patient if her patient was a suicide risk.  I replied, if an HIV+ person loses the will or strength to continue medical treatment, it is a risk of eventual death.

The reason I mention this is, I was just wondering, who's responsibility is it to make sure people get the best chance and best support to survive and thrive with HIV. 

I think the doctors probably see it as respect of individual liberty. After all, someone is free to decline treatment for most diseases. 

But I am sure social workers would see this question differently....  Social workers support their clients to healthy independent living, living with integrity, avoiding harm, abuse, etc. 

With all that we know about living with this particular disease, HIV, and how it is somewhat special - concerning stigma, shame, discrimination, fear, etc etc, maybe there needs to be more attention to supporting people who can't manage on their own, to stay the course.

I mean, after all, the treatment is SO successful and the prognosis is So good if people are in regular medical care and get the drugs they need when they need them.   IF 25% of American HIV+ people are being lost, I wonder how many of them are doing so in complete intellectual and emotional control and awareness of their decision and the repercussions. Few, I would guess.

What is the situation in the USA? Elsewhere?

And would this all be cost effective.

It's cost effective to identify HIV+ people and get them into surveillance, because its cost effective to have people on successful HAART when its necessary, rather than horribly sick.

Wouldn't it be cost effective to through a little government paid social work support to any HIV+ person who wants to stay healthy but is struggling?