October 6, 2007
Welcome. This is Bonnie Goldman, Editorial Director of The Body PRO. I'm in San Diego at IDSA 2007, one of the year's HIV conferences. Right now, I'm in the poster session where researchers are standing in front of their posters. There's nothing like hearing the results of research directly from those who actually conducted the research. It is these women and men who are transforming HIV treatment and care. In this podcast, the researchers will introduce themselves and then summarize their study. After their summary, I'll ask a few questions.
I'm Michael Mugavero, an assistant professor at the University of Alabama [UAB], Birmingham, and an HIV care provider at the UAB 1917 HIV/AIDS Clinic. We conducted a study to look at clinic appointment adherence.1 There's been a lot of interest recently in expanding adherence in HIV beyond medications, to look at linkage in retention and care.
We did a study to look at appointment adherence among patients who were engaged in care at our clinic over a 30-month period. We looked from August of 2004 through January 2007 at all patients who had come to at least four visits occurring over six months of time to see what patient factors put them at higher risk of missing appointments. We evaluated our cohort and found that 80% of our patients seen during the study period actually had four visits over six months, and were included in the study.
Among the 1,200 patients, I had very similar breakdown of their demographic characteristics as far as overall population. The average age was about 42. About a quarter were female. Half were African American. A third had public health insurance. A quarter were uninsured. Then we went on and looked at missed visits. In the past, what folks have typically done is looked at missed visits as a "yes" or "no," without looking at: Did you have a lot of missed visits? A few missed visits?
What we did was, we said, instead of looking at only "yes" or "no" over this time period, we're going to take all of the visits and look at a proportion -- so looking at the number of no-show visits, divided by the overall number of visits. So, developing a proportion very similar to what's been done for medication adherence, to get a proportion of this patient missed this percentage of visits -- similar to pill counts or MEMS [Medication Event Monitoring System] used for medication adherence.
What we found was that only a third of patients -- actually, less than a third of patients -- missed no visits during this 30-month study period.
There was a pretty wide range of missed visits, using this proportion measure, in that 40% of patients missed 25% or more of their visits, which meant that they were a no-show for one out of four visits or more during the study period.
When we looked at which patients were at higher risk to miss visits, it was younger patients, African Americans, patients who lacked private health insurance, and patients with substance abuse disorders.
What was concerning for us was that these are the groups that epidemiologic studies have shown are increasingly and disproportionately impacted by the epidemic in the U.S. So these studies that we have done now, this first study, has helped us find groups at higher risk.
The next step is figuring out why. So the first step is to figure out a conceptual model and think about what factors are at play, so we're viewing this as an interplay of both patient characteristics and environment.
So, within the environment, looking at someone living in an urban versus a rural setting:
At the patient level, there's a certain patient factor -- the patient's age and sex and race, but there's also insurance status as a mediator of access to care. Also things like enabling factors, as far as: Do they have social supporters? Someone that could help them come to visits?
Then finally, their health beliefs. Do patients believe you have to go to the doctor or not? It might play a role in them coming to visits.
I think in the future the next steps for us with this is to actually get a bunch of patients together and sit down with those that didn't come and those that came all the time in separate groups. And ask the ones that didn't come, "What are the barriers you face? Is it transportation? Is it lack of housing? Is it childcare? Is it other things in your life? Is it problems of denial, stigma, distrust?"
Then we'll also ask those that do come all the time, "How do you make it to clinic visits all the time? It's hard for some folks to come, but you seem to keep coming. How do you do this?"
I think trying to understand those barriers and facilitators will allow us to develop interventions to help those in need to better come to their visits, get the medicines they need, and then have good outcomes.
Is this a Ryan White funded clinic?
It is. We have Ryan White funding.
Is it mostly a free clinic for people who don't have insurance?
Yes. It's open to anyone, regardless of insurance status. So in this current study, it was about a quarter of our patients who were uninsured. Among new patients, it's a lot higher. But when they come in, through the help of our social workers and case managers, we'll help get both public insurance and also assistance through Ryan White funds.
Do you also have people who are here illegally?
We do, but it's a fairly small proportion, actually. Our population is mostly white and African American. We have got a very small Latino population. We have got a very small mix of other racial and ethnic groups.
Is it equal in terms of gender?
No. It's about three quarters males and about a quarter females ... that's our overall breakdown.
And in terms of substance abuse?
It's interesting. In our study, we measure substance abuse and mental illness and alcohol abuse by looking at problem lists and providers' diagnoses. Several studies have shown that providers tend to under-diagnose these problems. So if we just look at our provider lists, actually, half of the patients had an effective mental health disorder: depression, anxiety, bipolar disorder. About 20% had a substance use disorder, and 13% had an alcohol use disorder. I think, looking at previous studies, those are probably underestimates. In the future, we're going to be using these standardized questionnaires to ask all patients every six months about their substance use, depression, anxiety, alcohol use, medicine adherence. I think in the future we'll have a better sense of how common those problems are.
I think we know from other studies at our clinic and other centers just how common mental illness and substance use is with HIV infection, and how integrated care for those disorders is so critical to giving patients the best chance for good health outcomes.
At your clinic, is there adherence support at the moment?
There's some, but there's not a formalized program. Actually, we just received some additional funding to help develop an adherence to medicine support intervention. We're going to be: working with one of our clinic chaplains who has headed up a lot of community work, partnering with our patient advisory board to help develop support teams, and using a support team model that has been used by other studies to try to help promote medicine adherence.
In the future, we're going to be working with the CDC [U.S. Centers for Disease Control and Prevention] to try to develop an intervention to actually promote appointment adherence, so, clinic adherence. The fact that in our study we found that, among patients, 40% missed one out of four visits was pretty striking. Other centers across the country are seeing the same thing. I think this prompted this really big push by the CDC, NIH [U.S. National Institutes of Health], HRSA [U.S. Health Resources and Services Administration], and others to say, we need to really focus on linking patients to care, and keeping them in care, once they come to see the doctor.
Is there a guess as to why people are missing appointments? Is it transportation related?
I think, for sure. I think there are a lot of factors at play. I think there are going to be things like transportation, housing. A lot of our patients have young children, adults, or family members they care for. I think also there are a lot of challenges with stigma and distrust that might play a role in patients missing visits. There is probably a host of factors, and even things at a structural and a clinic level. Some patients might have to wait in the waiting room a long time and it's really bothersome ... and things of that nature.
I think we have got a model that incorporates a lot of different things. I think, in the end, it's going to be a lot of things that contribute. But figuring out what it is is the key. So, until you know that, it's really hard to intervene and try to help find out what the problems are to fix them and make sure patients are coming and staying in clinic with us.
Are transportation vouchers ever given to patients?
We do have some assistance with transportation, although there's not a formal program. Our social workers do help several patients in need with transportation, but we don't have a formal system in place to assess need and to provide transportation.
Is this population some of the poorest people in the country?
There are, certainly. We've seen in the South, in general, this boom of the HIV epidemic. Then, talking to colleagues around the country, the question is: What's going on in the South? I think the interplay of poverty and other sexually transmitted infections ... we have got this milieu where HIV is really just growing more rapidly than elsewhere. So I do think that poverty plays a big role in this. It's some of the challenges we face in addressing the epidemic.
Have you seen the level of stigma change over the years?
Stigma is one of those things that is so hard to assess. I think we haven't used any of the measures out there to ask patients about stigma. I think what happens is, I tend to see the patients that come, and keep coming. So I think that's probably a group that doesn't have as much stigma, or perceived stigma, as other groups.
When I go out and talk to community groups, there is still a lot of stigma and a lot of distrust. It's a challenge. I think it's a major challenge.
Is it distrust of the medical establishment and distrust of the medication?
I think it's distrust of the medical establishment. There are questions about the origins of HIV. I think there are still a lot of individuals who believe that the government created HIV. I think that by us going out and talking to community members and being able to have different opinions [, we can make a difference.] My message to folks is that, here's the situation: we know that HIV is here; regardless of how it got here, it's here. It's in our backyard. I'm here to partner with you to address it and to try to help your community and get folks into care with us.
Thank you very much.