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Patient and provider perceptions of a comprehensive care program for HIV-positive adults over 50 years of age: The formation of the Golden Compass HIV and aging care program in San Francisco
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Providers expressed the need for a clinical care model that adequately addresses the complexity of providing care to older PLWH. Providers care for patients with intersecting social and clinical health needs that extend beyond the standard of care and treatment they can provide.
Abstract
Objective
People living with HIV (PLWH) are living longer and developing comorbidities and aging- related syndromes. New care models are needed to address the combined burden and complexity of HIV and its comorbidities in this group. The goal of this study is to describe qualitative data from patients and providers that informed the development of a comprehensive care model for older PLWH.
Methods
Patient and provider perspectives on the clinical care and service needs of patients living and aging with HIV were explored via surveys and focus groups at a safety net HIV clinic in San Francisco. We surveyed 77 patients and 26 providers and conducted separate focus groups of older patients living with HIV (n = 31) and staff (n = 20). Transcripts were analyzed using thematic analysis. Themes for a care program were additionally explored using findings from the literature on HIV and aging.
Findings
Themes from surveys and focus groups emphasized (a) the need for knowledge expertise in HIV and aging, (b) focus on medical conditions and determinants of health of particular import (e.g. marginal housing) among older PLWH, (c) co-locating specialty services (e.g. cardiology, geriatrics) with primary care, and (d) addressing social isolation. Findings informed the design of a comprehensive, multidisciplinary care model for PLWH called the Golden Compass program composed of four "points": Heart and Mind (North), Bones and Strength (East), Network and Navigation (South), and Dental, Hearing, and Vision (West).
Conclusion
Based on patient and clinic staff perspectives from surveys and focus groups, we designed a multidisciplinary program of integrated primary and specialty care, as well as housing and social support, to address the needs of older PLWH within a safety-net infrastructure. Golden Compass launched in 2017 for PLWH older than 50 years. Future research to evaluate the effectiveness of this care program in improving patient outcomes and satisfaction is ongoing.
Provider and patient knowledge of HIV and aging topics. A prominent theme from both patient and provider focus groups was the appreciation that providers needed to have a deeper knowledge base to care for older adults with HIV. Patients expressed a desire to under-stand more about HIV and aging issues generally. As one patient indicated, providers should assume that they know very little about getting older with HIV:
Healthcare needs of older adults living with HIV. A number of overlapping health issues and needs were raised in both patient and provider/staff focus groups. Patient health issues and needs included neurocognitive screening, addressing falls and frailty, care navigation and case management, the profound impact of mental illness and marginal housing on those who are aging, and access to ancillary services such as dental, vision, and hearing.
A health concern in both patient and provider/staff groups was addressing cognitive changes. One patient described a need for integrating screening for cognitive changes as part of regular care:
"Mental functionality as we get older is going to be an issue for some of us, and I think screening or however you check for early stage dementia or Alzheimer's is something that would be important [to incorporate into this program for us over 50]. Because you don't want to get to the point where you can't make those decisions and then realize you didn't."
A provider shared concerns regarding a patient who was experiencing cognitive decline that interfered with her care:
"[O]ne of my oldest women who's 74, she's been having a lot of dementia and cognitive issues, and part of what had happened for her is she's been getting really confused and paranoid and fairly hostile and reactive when she has come in. And I think it's really interfered with her care and her understanding of what is happening. And it's disturbing, because she's quite a frail, elderly woman at this point, and has multiple other HIV-related and non-HIV-related health issues."
Frailty and falling were also common health issues for PLWH over the age of 50, and both groups discussed a need for programming to focus on raising awareness in preventing falls. One patient described frustration at not being informed that his falls were likely due to health issues such as high blood pressure:
"A couple of years ago, I kept on falling and I was on the bus. I would just fall onto the floor. I didn't know what was going on. My doctor told me, 'Oh, well you know, your high blood pressure is too high, you got to lower it down.' And I didn't know, I told him, 'You mean to tell me I was falling and I didn't know my blood pressure was causing me to fall?'"
One patient suggested instituting exercise activities into a program for older PLWH as part of preventing falls and addressing other health conditions:
"[I]t will be nice to have a place on Ward 86 to do physical therapy for people 50 and over just because I don't know, some of the medication, your bones get, I don't know, brittle. And also a place where you can do some exercise, light exercise and yoga, it really helps, I'm 51 but I expe- rience a lot of stress sometimes."
There was high agreement and emphasis among patient and provider focus groups about the need for more case management and social services, especially for those who are margin- ally housed. Older patients living with HIV often have many medical appointments to keep. One patient explained:
"[W]e have to go to so many different places, this is just the list of the doctors that I have. I mean it's at least 20, 25 of them. It's ridiculous and it's a lot to deal with. Yeah, because you can miss an appointment and then you're screwed, you're set off until months later to get to [see] some of these [doctors]. Referrals are good. And the lady said I didn't need a referral at this particular place on Geary Street. . . But she said, eventually you'll need a referral so I've got to work on that to get that ready. And it's all a process. It would help [if we could have] at least somebody in between [who can] guide you where you need to be going."
Patients pointed out that the inability to access timely case management becomes problematic for accessing services like housing and food:
"[T]hey could use some more social workers because they're always jam packed in there and busy. A lot of times, say, you get a letter from the food bank and they want you to come in with labs and a letter of diagnosis and all that stuff every six months-but you don't see your doctor for another month."
Better access to ancillary services was a resounding theme among patient focus groups. Many patients expressed frustration that centered on being able to access dental and vision care:
"What I don't understand about healthcare [is that] your dental is just as important because it has a lot to do with your overall health. With your dental, I got to go through all these hoops and hurdles. Teeth have a lot to do with your health but. . .I have to write a [letter] to [organi- zation offering free or low-cost dental care] for acceptance as to why I should be in the program."
Building social networks to address social isolation and loneliness. Another emergent theme was social isolation and loneliness among older PLWH and a need for regularly held social gatherings and events. A clear consensus emerged among patient and provider focus groups regarding patients' need for improved social support networks. One patient suggested:
"We should have. . .somewhere we can go and socialize. . .have lunch and have social workers there, if we need to get stuff done. For me, I live alone, I have friends but sometimes my friends work and I like to get out and be around other people socially during the day, I have groups but they are in the evening, but in the daytime I'm just stuck at home. We need somewhere we can just go and, you know, have lunch or somewhere to socialize at."
Patients had several suggestions for the types of activities that a program for older PLWH could host. These activities included exercise classes (e.g., yoga, tai chi). One patient explained that living on limited income often prohibited him from socializing and that outdoor social activities organized by the program would help to address that:
"I'd say organized outdoor walks, stuff that promotes [being] outdoors, organized through the program would be a great way to keep people from being sedentary. At 900 bucks a month, after I pay rent, my utilities and everything, I'm not left with a lot of money to go out."
Patients described a desire for organized opportunities to interact with other older adults living with HIV as an important way to help address isolation. Many older PLWH feel isolated due to the stigma of being HIV-positive:
"When I first was told that, that I was HIV, I wanted to kill myself . . . But now as time went by, I'm happy that I'm alive and. . .I feel in my heart that this group and people getting together, oh god, it's strength, it's so much strength, I mean without it, I don't know what I would do. I'll be in my room a lot of times and I'll just be thinking a lot, I do a lot of thinking [alone, but] it's best to let it out instead of holding it in because when you hold stuff in, it kills you more and when you let it out, you feel free, because you got the load off your shoulders."
In general, patients felt having peer support groups would provide enormous benefits and a welcome opportunity to share resources. Discussions in patient groups reflected patients' eagerness to share knowledge and gather tips among peers. One patient commented about the helpfulness of attending the focus group for gathering knowledge regarding services:
"All the things that we've discussed here . . .I didn't know about the orthopedics place, some people didn't know about the eye thing."
Similar themes were raised among provider/staff groups regarding social isolation and loneliness among older PLWH. Providers discussed how patients who have outlived the HIV epidemic are left isolated and in need of social connection:
"Well, certainly, as I pointed out, the sense of isolation is heightened for HIV seniors because the epidemic has decimated their friends and connections. That's not the case with just the general population that would be HIV negative. Their friends were not impacted in such a dramatic way."
One provider explained women often experience a profound sense of isolation due to the loss of kinship in the context of HIV stigma:
"In terms of the communities they've lost, I think for women with HIV that I work with, the stigma is still so profound for them, that's what really feeds a lot of their isolation. And a lot of them want to be very family and community-based, but they feel stigmatized about the HIV. Otherwise, health-wise, I think they share with the non-HIV population, you know, the same kinds of issues."
Providers specifically identified issues they observed among "long-term survivors of HIV." The consequences of long-term survivorship include the lack of financial security and long- term stability. Providers expressed concerns for patients who are often long-term survivors left with very little in terms of finances and other resources:
"People that age with HIV usually have been HIV positive for many years, so they've gone through the initial earlier parts of the epidemic in their twenties or thirties. And I just realize how much of your resources later on in life really has to be developed or built at those ages, because if they dropped out of school or didn't build up those, you know, credentials and abili- ties, then when they get to the sixties and seventies, they may not have family. They don't have, you know, savings. They don't have a retirement plan. And, you know, so we're-it's very difficult. It just struck me how little reserve they have at that age, and that just seems to put them at a much more disadvantage than any other patients that I've had to take care of. So it's very sad."
Need for "blended," integrated primary, geriatrics and specialty care. Themes derived from both patient and provider focus groups underscored the perceived need for a compre- hensive HIV-aging clinical care program that "blends" primary care with both geriatric con- sultation and specialty care for comorbidities most relevant to older HIV-infected patients (e.g., accessing cardiologists on-site). One patient noted:
"[The program should] incorporate all these things: pharmacy care, social care, primary care physician and all of it working seamlessly, it would be less work for the clinic. . .if it's staffed right, having something for 50 and older. . .would really work well."
Patients and providers both appreciated the benefits of co-locating additional care paradigms for older PLWH right in the clinic instead of making outside referrals for additional care components. As one patient explained:
"Referrals outside of the practice for a specialty are always problematic as we all know and it's just difficult to manage, if somebody is doing that for me, which I don't like, you're never really sure what you're going to end up-if you get into a specialty that may not be fully aware of HIV and certainly not HIV and aging. . .The referral not to just say cardiology. . ..cardiology at UCSF but a referral to cardiology would be not just a referral to the cardiology department but somebody who knows HIV cardiology and I mean even more specialized, you know, aging."
A provider sympathized with the difficulty her patients experience having to travel to and from various appointments that are located across distances:
"I think it's hard enough for young patients to go over to the hospital for various appoinments. So I mean, just being able to centralize the clinics somehow. Maybe even, you know, Lab, Radiology. I mean, I don't know if they have enough room in the main-the whole hospital building. But it seems like it would be nice if we could just shorten the distances they have to travel."
Providers expressed the need for a clinical care model that adequately addresses the complexity of providing care to older PLWH. Providers care for patients with intersecting social and clinical health needs that extend beyond the standard of care and treatment they can provide. One provider explained:
"[Many of] my patients are elderly, but cancer itself makes life complicated, and they're HIV- positive on top of that. This patient of mine, he's also over 70 and was diagnosed with early stage anal cancer. Medically it's a pretty straightforward thing. You know, you get 5 to 6 weeks of chemo and radiation, and at his stage, the cure rate is probably in the 90 percent range. Medically it looks very simple, but then when you go into the logistics of treating this person, his housing is very unstable. He had been, you know, on the streets many times over years. Part of the reason could be drug use and maybe the HIV as well."
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