Identifying the needs of older people living with HIV (≥ 50 years old) from multiple centres over the world: a descriptive analysis

Given the efficacy of cART, HIV infection is no longer a life-limiting condition. Nowadays, a special focus needs to be made in addressing the quality of life of the extended life expectancy. Health needs in the elderly are different from that of other age groups, posing clinicians to the additional challenges associated with aging. Patient-generated health data, albeit presenting limitations, is a useful tool to gain insight and improve the care provided by physicians in the aging population worldwide, and thus increase the efficiency of the healthcare system [27]. Here, we assessed the needs of the PLWH aged 50 years or over using a questionnaire collected from patients from different countries. Briefly, our data show relevant differences in the self-perceived patient’s situation and satisfaction with healthcare between regions.

The aging process among PLWH is particular. Together with HIV infection, social circumstances, relationship issues, comorbidities and stigma may have an impact on their HRQOL [23, 28, 29]. For example, according to the Healthy Aging Score criteria developed by the Rotterdam group (an aging score accounting for mental health, cognitive function, physical, social support, and quality of life in general population) [30], a study carried out in OPWH at a tertiary HIV care clinic in Toronto found that only 39% of participants matched the healthy aging range scoring [21]. Following this line, another study found that socio-economic status was significantly correlated to mental and physical HRQOL after adjusting for disease severity in a German cohort of over 700 OPWH [19]. The first stage of our questionnaire consisted of a self-perceived evaluation of the current patient’s situation. Surprisingly, we found that the eldest group (>75 years old) showed the best health perception, despite scoring the highest on geriatric problems and the lowest in the social sphere. This could be explained by considering that these people report a high score in close friends and family and the lowest score in psychological problems and financial problems. In addition, this group reported higher levels of exercise, and that all of them are retired. Of note, this group consisted of only 13 people. Future studies should collect data in OPWH over 65 years old, especially within Africa and CSA to be able to appropriately assess their situation.

It is remarkable that patients in Africa report a great health perception despite a high score in depression, financial problems and loneliness. A similar pattern is seen in CSA, where social problems seem to be central. On the other hand, EEI participants reported the lowest health perception score, probably associated with worse social and loneliness scores. WE show better scores in social and financial problems, but lower scores in health perception.

HRQOL is an essential component of health in PLWH, plus it contributes to other medical outcomes such as HIV infection progression [31]. In line with this, HIV status sharing is a personal decision and has been related to cART adherence, viral load suppression and prevention of HIV infection, particularly disclosure to sexual partners [32, 33]. Supporting previous data, people in EEI report a relatively low social score (56.4%), 40,2% of them live alone, very low HIV disclosure (41,9%) and, an alarming piece of information, less than 50% show undetectable viral load. Social factors might be associated to HIV being a highly stigmatizing, taboo topic, leading to poor ART adherence thus affecting viral load. WE, CSA and Africa show higher sharing scores (63.7%; 76.4% and 90.5%, respectively) and over 90% of them report undetectable viral load. Other remarkable result is that up to a fifth of African participants admitted forgetting taking ART. This could probably be explained by a lack of consciousness about the importance of good adherence, considering other unmet needs. Similarly to others, our results show high rates of poor adherence. A recent meta-analysis of ART adherence on Sub-Saharian Africa yielded that only three fourths of OPWH (>50 years old) are adherent to cART [34]. These are relevant region-specific starting points that highlight where we should strengthen our efforts to.

OPWH are at high risk of geriatric syndromes such as frailty, polypharmacy, and falls [8]. Pre-frailty and frailty affect more than 50% of effectively treated OPWH and is associated with an increased risk of adverse health outcomes that contribute to the overall reduced survival and HRQOL of PLWH [35]. In line with this, as expected, our results show a tendency to develop geriatric conditions as patients are older, with no significant differences among regions. Africa and CSA are the regions with more unsatisfied OPWH, a phenomenon that intensifies in older age groups, although general health perception is better in overall than in Europe. This stands out the needs of these patients for a more comprehensive care. Additionally, sexual activity plays a significant role in the individual’s satisfaction and has often been ignored when analyzing health of older people [36,37,38]. HIV diagnosis and the fear of transmission have a big impact on sexual life [39, 40], despite the efforts of campaigns such as “Undetectable equals Untransmissible” (U=U). Our findings are in line with literature and highlight the importance of discussing the sexuality of OPWH from an open perspective. A suitable strategy to this would be considering sexual sphere while interviewing our patients.

General care of OPWH should consider both HIV-related and age-related conditions. A Patient-Centered Care [41] approach should be considered as the main strategy, since it attends access to care, emotional support, physical comfort, and respect for patient’s preferences, among other principles. Patient-Centered Care is accomplished by collaborative work between the patient and an interdisciplinary team, which facilitates active patient involvement in decision making [42]. To offer appropriate management, care providers should predict the demands of aging population and change both approach and goals of their offered care [5]. Our results highlight the importance of this matter by showing how the patient needs vary by region and age group. However, needs change from patient to patient, so it is important the implementation of Patient Reported Outcomes (PROs) and the multidisciplinary geriatric assessment of these subjects. Although our study is a screening, it could be considered by care providers to better understand OPWH demands and direct their efforts towards them.

The second part, which addressed for patients’ satisfaction about their healthcare, reflected how different healthcare systems are structured. For instance, in Africa, HIV checkpoints are often more accessible than conventional healthcare. Patients may not need to travel as far, or wait as much as they would in a public hospital. This might be why there was an overwhelming response in African patients when they were asked who should manage their other conditions – 81% of them answered their HIV specialist. On the other hand, people in CSA mostly answered that other specialists should do it. In WE and EEI, half of them prefer their HIV physician, and the other half would think that either their general practitioner or other specialist should do it.

In line with this, people from Africa and CSA are the least satisfied with the healthcare attention they receive for functional, psychological and social problems. Over a half of patients in Africa and CSA would prefer to see their doctor with a higher frequency than every 6 months, whereas most Europeans are content with their situation, and would consider reducing their medical visits to one annually. Again, essential unmet and met needs may be the key to understanding this outcome Our study had several limitations. First, we did not know for how long patients had been living with HIV, which could determine health perception and other psychological and social matters addressed in our study. With only 25 people addressed, Africa is much underrepresented. On top of that, none of those patients was over 65 years old, which means that the needs of African OPWH were not fully measured. Similarly, in CSA there was no data collected for the age group of >75 years old. In fact, only 2% of our participants were over 75 years old, making it difficult to draw strong conclusions on this age group. As this study relies on declarative data, we cannot rule out that some participants may have provided inaccurate details. Finally, these results were collected in 2018, which means that current situation of OPWH may have changed after the COVID-19 burden and the Russian massive invasion on Ukraine, especially in EEI. Indeed, a recent meta-analysis highlighted the effect that the COVID-19 pandemic had in sexual heath, including disruptions in HIV/STI testing, and changes in sexual behaviors [43]. Prospective studies should be carried out since they allow us to understand a wider scope of needs among HIV aging population, as well as the determining factors to improve treatment results based on patients’ needs.

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