What Problems Associated With Ageing Are Seen in a Specialist Service for Older People Living With HIV?

Howell T. Jones; Alim Samji; Nigel Cope; Joanne Williams; Leonie Swaden; Abhishek Katiyar; Fiona Burns; Aisha McClintock-Tiongco; Margaret Johnson; Tristan J. Barber


HIV Medicine. 2022;23(3):259-267. 

In This Article


All patients reported issues related to ageing with HIV regardless of their Fried score, highlighting that lower frailty scores do not always equate to uncomplicated ageing. Frailty was prominent in our sample, with 83% classified as frail and a further 10% as pre-frail. Our sample is small and preselected and it is likely that we were referred those who were considered most symptomatic by their HIV clinicians, thus explaining why the prevalence is so high, although the full spectrum of Fried scores (0–5) was seen. As a result of our sampling, our results cannot be extrapolated to estimate the frailty rate among older people living with HIV in the wider UK population. For reference the prevalence of frailty in the UK in a sample of approximately half a million people aged 37–73 years was 3%.[22] Frailty in our sample was diagnosed using a bespoke adaptation of the Fried score using exclusively self-reported information potentially limiting results. Secondary analysis of data from the Irish Longitudinal Study on Ageing (TILDA) (n = 4961) showed that the characteristics of frailty are similar regardless of whether solely self-reported or objective measures are used.[23] With regard to people living with HIV, a recent study (n = 80) found similar rates of frailty when comparing an objective assessment utilizing gait speed (19%) with a subjective assessment utilizing a self-reported health questionnaire (20%).[24] The prevalence in our study is higher than data from an Australian study which reported 28% and results from a service for older people living with HIV in Brighton, UK, which reported a prevalence of 65%.[11,15] These factors emphasize that the method of defining and identifying frailty impacts the results of prevalence.

The reported low QOL and higher proportion of disability within our sample are similar to results found in previous studies.[20,21,25,26] Pereira et al. (2014) used the WHOQOL-HIV-BREF to determine the QOL in a Portuguese sample of 185 people while Meemon et al. (2016) did the same in a Thai sample of 329 participants.[20,21] Both samples were younger than ours (mean ages 58 and 42, respectively) and had also lived with HIV for less time (6.34 and 10.40 years, respectively) which may explain our cohort scoring lower across the physical, psychological, level of independence and social domains.[18,20,21] The UK and Portugal are high-income countries but there was a large discrepancy in the environmental domain (13.95 vs. 25.97), suggesting that our cohort are less satisfied with their living conditions, more comparable to Thailand (13.91).[20,21] This could be the case, as our sample came from one site while the Portuguese sample was recruited from 10, although it may also demonstrate the impact of older age and a prolonged time living with HIV, suggesting that an earlier year of diagnosis may still be impacting a person's environment and therefore QOL.[20,21]

Socioeconomic factors such as poverty rates have been show to impact rates of frailty directly.[27] The 2017 UK national HIV patient survey, 'Positive Voices', found that financial insecurity was common, with 46% of women and 32% of men with HIV living at or below the poverty line (annual household income < £20 000), and 68% of women and 44% of men with HIV not always having enough money to meet their basic needs.[28] British governmental data demonstrate higher rates of poverty, particularly in the context of older people, in urban areas such as London than in rural regions.[29] Migrants are also more likely to be frail, a finding not fully accounted for by confounding factors, highlighting the importance of enquiring about immigration issues.[30] Although not highly prevalent in our cohort, these factors may be contributing to our sample's frailty rate, supporting the idea that strategies for the management of frailty in older people living with HIV should be determined at the local level.

Our results also highlight the wide nature of ageing with HIV, with 18 different issues identified. Depression was common, with 51% of patients subjectively reporting affective symptoms supported by the median PHQ-9 score being 11, confirming a similar rate objectively. A high prevalence of depression in older people living with HIV has been reported previously, with a US study reporting a rate of 52% of participants (n = 1000) feeling depressed within the last year.[31] However, ageing alone is unlikely to be responsible for this, so these results support the recommendations of the British HIV Association (BHIVA) and European AIDS Clinical Society (EACS) to screen all patients, as our service does, for affective symptoms at least annually.[32,33] Just over a third (37%) of patients in our sample reported memory problems, with 63% of those who completed a MoCA (n = 8) having an abnormal result. Cognitive impairment in older people living with HIV is commonly reported when the HIV-associated neurocognitive disorders (HAND) criteria are applied.[34] This shows that while our sample is small, our results corroborate previous studies, emphasizing the importance of enquiring about memory problems with services having clear local protocols for either in-house objective assessment or onward referral. Patients within our cohort with depression, anxiety or suspected cognitive impairment were managed by referrals to in-house peer support, psychology or liaison psychiatry services with a high rate of uptake by attendees.

Finally, 29% of the patients reported recurrent falls, which is similar to the findings of a US study (n = 155) where 26% reported falling often.[35] Falls are well reported in the literature on geriatric medicine, with evidence recommending a multidisciplinary approach combining medical review with pharmacist-led medication review and therapy-led balance and strengthening exercises and appropriate walking aids.36–38 Given the complications of HIV and its treatment, knowledge of ART as well as other medications was critical and the involvement of an HIV specialist pharmacist was invaluable in managing this problem. Polypharmacy was prevalent in the sample (69%) but in most cases was appropriate due to the multi-morbidity associated with ageing with HIV and was not modifiable.[15,31] Cases where medications could be withdrawn predominately involved long-term use of opioids and benzodiazepines. Use of these classes of medications has been shown to be both prevalent among older people living with HIV and linked to an increased risk of falling.[11,39,40] Medical and pharmacy reviews were performed alongside assessments by an experienced physiotherapist and occupational therapist who could provide brief interventions and refer on to appropriate community services. Given the high prevalence of falls in older people living with HIV this supports the use of our multidisciplinary model.

People living with HIV are two-thirds more likely to be current tobacco smokers despite smoking having been shown to significantly increase the risk of frailty.[41,42] Meanwhile, the prevalence of alcohol use disorders in people living with HIV is approximately 30%, with high usage associated with falls and cognitive decline, and a recent study linked chronic alcohol use to the development of frailty in people living with HIV.43–46 Despite the low prevalence of smoking and alcohol use disorder within our cohort, it remains important to screen for these due to their potential impact on ageing when assessing older people living with HIV.

Models of care for older people living with HIV vary worldwide. Management of ageing-related problems and frailty is becoming more central to the design and delivery of HIV services, with EACS emphasizing the importance of frailty screening and BHIVA promoting the incorporation of geriatricians into the care of complex older people living with HIV.[32,33] Similar models of care, incorporating geriatricians into HIV services to deliver CGA, have been discussed previously, but given our location and population we have achieved almost equivalent numbers of patients through the service in a considerably shorter time, as well as having greater variability in gender, race and sexual orientation, which can impact the presentation of frailty.[11]

Feedback from attendees was predominately positive, with many happy to have had the opportunity to discuss issues not typically explored. Several highlighted the clinic being conducted within the HIV outpatient department as an incentive for them to attend, as they were fearful of mainstream services due to concerns about discrimination. This is not unexpected as a previous study identified that anticipated or experienced stigma was a key barrier to accessing healthcare services for people living with HIV, with 35% worrying that they would be treated differently, 14% having experienced discrimination and 11% having been denied or refused a treatment or procedure due to their HIV status.[47] The majority felt that the therapy and pharmacy reviews were useful, although some reported feeling that not all areas of the assessment were relevant to them and would have preferred to self-select which to undertake. Several of the patients, primarily those with affective or cognitive symptoms, struggled with the length of the appointment and reported that they would have preferred to have done them separately. The high burden of questionnaires was conveyed as a deterrent to attending.

During the COVID-19 pandemic the clinic was suspended due to staff reallocation and national recommendations to conduct appointments virtually where possible. Clinicians were advised to follow the referral procedures in place prior to the formation of the Sage Clinic such as referral to local outpatient or community therapy services, although discussion of complex cases with the relevant professionals was available throughout.

After our interim analysis we streamlined the service, removing the pre-clinic questionnaires, instead allowing the selection of appropriate tools to be chosen following clinical assessment and to be conducted on the day. We now also identify before the clinic those who would benefit from a full MDT assessment versus those who require only certain reviews, in order to prevent overwhelming attendees. Further information has been given to referrers to ensure patients are fully aware of what the clinic will entail, but also to refer patients with pre-frailty. We have recommended screening for affective symptoms prior to referral, with those with high scores being referred to psychology in tandem to allow for a more meaningful patient experience. We also now offer shorter follow-up appointments to allow for the review of investigations and interventions.

To our knowledge our holistic multidisciplinary model incorporating nursing, therapy and pharmacy colleagues alongside physicians has not been described previously with regard to people living with HIV. We present these initial findings while we collect data around long-term outcomes and cost-effectiveness which will be published in future. Despite limitations, this is an evolving area with a paucity of evidence, and these early data can contribute to the discussion of how best to deliver services to older people living with HIV.[48] Our current recommendations would be that services start by ensuring they have a clear strategy in place for frailty screening to determine local prevalence, and have clear referral pathways to existing geriatric medicine and therapy services in place at this stage. Once local needs are established, a bespoke clinic can be considered, but as attendees may fear stigma or discrimination, we support welcoming external healthcare professionals into patients' existing space as the preferred model of care. We endorse an MDT approach, offering CGA with a particular focus on the geriatric medicine syndromes of cognitive impairment, depression, falls and polypharmacy.[49]