Oluwatoyin (Toyin) Adeyemi, MD, attending physician of infectious diseases, at Cook County Health and Hospital System, discusses the CORE Healthy Aging Initiative (CHAI).
Oluwatoyin (Toyin) Adeyemi, MD, attending physician of infectious diseases, at Cook County Health and Hospital System, discusses the CORE Healthy Aging Initiative (CHAI).
Interview Transcript (slightly modified for readability)
“Our research is called the CORE Healthy Aging Initiative and it’s because I work at the CORE center, which is an HIV and infectious disease clinic of the Cook County Health and Hospital System in Chicago. I’ve been practicing there since 2001, and really have been very interested in the aging [of] patients with HIV infections. Personally, about half of my patients in my practice are over the age of 50, and [although] 50 is kind of young, in the HIV world, it’s still what we call ‘aging’.
Nationally in the US, it’s thought [that] about anywhere between 45 to 50% of the adults living with HIV right now are over the age of 50, so [it’s] a large and growing population. Among new diagnoses of HIV, it’s thought to be somewhere between 17 to 20% of new infections are in adults over the age of 50. So, we have a mix of people who are newly diagnosed over the age of 50, and a large proportion of our patients who have been in care for decades who are aging well with HIV, but could be aging better.
There’s been a lot of press about aging with HIV, and the numbers, and lots of initiatives really looking at research questions, [such as] does HIV accelerate the process of aging? What are the comorbidities with HIV and aging? A lot of this has happened in research settings. What we really need to figure out is, what are the needs of the patients, [and] have the patients tell us what their concerns are. I think the best strategies that we develop come when they come from the patients themselves. Sometimes as researchers, as physicians, we think we know what needs to be done. While that’s great, we really need to make sure that we’re working with the patients.
There are organizations that have done a lot of work in trying to get the word out about advocacy for older adults [living with HIV]. I really do think there needs to be a lot more emphasis on primary care physicians and infectious disease physicians, like myself, approaching HIV as a comprehensive medical issue that has psychosocial and other implications.
The point of our research was really to figure out, in patients in our clinic at the CORE Center, where we see over 5,000 adults living with HIV (it’s the largest stand-alone HIV clinic in the Midwest), what their needs were for those older than 50 who are not enrolled in research studies. We have the WIHS studies and also we have MACS studies, we have the CEDAR [Project]— we have a lot of cohort studies. But, [we started] looking at patients who are not enrolled in clinical trials, who are coming in for doctor visits [or] nurse visits, and just asking what their needs are, [and engaging] that group that has not necessarily been engaged in research. The point of our study was to figure out what their needs were, to then develop strategies to address those needs both on a local level, and hopefully some of our findings translate nationally, because this is a national issue with half of [US individuals living with HIV are] older than 50.
What we did over a very short period, a two-month period from March to May of [2016], was have our peer educators who are part of our clinic population hand out paper surveys to patients as they’re waiting for their appointments, either scheduled or walk-in visits. [We were] trying to get a sense as to who they were, how long they’ve been living with HIV, what their comorbidities were, what their concerns were, [and then] having a rank [of] what we thought their top 10 concerns [were], based on information that we’d heard from our patients. We [wanted] to get an idea on how well they rated their health and, importantly, how tech savvy [they were] and how they liked to be communicated with. Knowing what the issues are, we need to figure out how well to engage patients and those needs and get those things met. Now with people living well with HIV, our [patients may visit the] clinic sometimes twice, maybe three times a year, if they’re doing well from their HIV standpoint. If we have these initiatives, we have to be able to figure out how to get information to patients, and figure out ways to engage them.
There’s a lot of stuff about social media and the younger adults with HIV, and how to reach younger adults, and we really wanted to figure out do [these older adults] use social media, are [they] on Facebook, Twitter, do [they] have a cell phone, do [they use] text messaging, because that allows us an opportunity to constantly reach them with targeted messaging [to] tell them about events or initiatives for aging [with HIV]. [We also want to] work with our non-infectious disease people in geriatrics, in social services, in psychiatry, in mental health services, to actually leverage some of those resources for our patients. We wanted to get an idea, in summary, of who [the patients] were, what their burden of illness was based on HIV and other comorbidities, what their top concerns were, what their psychosocial issues [were]— we wanted to look at social isolations, things that really do matter– and then figure out what their modes of communication were, so that when we did develop these strategies we could have an easier way to communicate with our patients.
What we did find was like we thought. The median age was about 56, so we really only were looking at people who were 50 and older; our oldest participant was 75. [Patients] were mostly African American in the demographics of our clinic, but we also do have, in my clinic, about 18% of our patients who are monolingual Spanish. [Due to this], we made sure that some of our surveys were in Spanish, because we do realize that the older population is not a homogenous group. They have very different needs based on gender, race, and language of communication. We found that more than 70% of them had been living with HIV for more than 10 years, [and] a lot of them for more than 15 or 20 years. There were very few who were newly diagnosed. [The patients also] had a lot of comorbidities: high rates of hypertension, diabetes, history of cancer, memory issues, hepatitis C, bone disease, a lot of things, but they also had a lot of other concerns. When we looked at the top five concerns, of the 10 that were listed, we had 30 or 40% [of the patients have the same top concerns]. The top ones were about living with HIV, money concerns, retirement planning, who’s going to care for [them] as [they] get older, memory issues, sexual health issues; so, they had a lot of concern.
As well as we do with HIV in our clinic, more than 90% of our older adults are suppressed, which is great, but [when] they self-rated their health we only had about 40% say that their health was very good or excellent. The rest of them [said] fair or poor. We do know that outside of HIV, that the more medical problems you have the less-likely you are to report your self-health as very good, and they had a lot. The average number of prescribed medications was four. [So although] a lot of them may be on single tablet regimens for their HIV, there were all these other medications for all their other comorbidities.
Polypharmacy [is] another big issue. Drug interactions that come with medications prescribed for heart disease and bone disease and kidney disease interact with HIV medicines. [We have some patients] who hide history of falls, [and] we know that has to do with frailty. So, they did have concerns, but the beauty of this study is that we find that a lot of them were tech savvy. More than 70% of them had a cell phone, they use text messaging, they’re on social media. We did see that very few of them were in social clubs or groups, so they did this by themselves, which is not surprising, but it kind of tells us that we will have to do a lot of targeted interventions, because a lot of them were not in large group settings. Most of them were their [own] primary health caregiver: 80% of them said they were their own caregivers, not [receiving] a lot of support in that regard. We asked about if they were willing to quit smoking, more than 70% of the active smokers (which about almost half of our patients were still smoking) said they were interested in quitting smoking, more than half said they would be interested in exercise classes at the Center, more said they would be interested in nutrition and lifestyle interventions and being in a focus group.
We did get a lot of information; close to 400 patients in 2 months were willing and eager to give us information about who they were, what their concerns were, what their medical issues were, what they were interested in, and how to get in touch with them. In this short time, we got a lot of information.”
In a follow-up discussion, Dr. Adeyemi stated the following.
"As a follow up, we are starting the CHAI monthly series at our clinic in Mach 2017 with a brainstorming meeting with our community advisory board and peers in February 2017 to finalize format and objectives. The series will be open to all adults over age 50yrs and will include exercise sessions, seminars on health and psychosocial topics chosen by participants and a resource table available to get additional information."