Understanding the lived experience research priorities for improving health-related quality of life in people living with HIV with cognitive impairment

Abstract

Background

People living with HIV experience higher rates of cognitive impairment (CI), and at younger ages, than the general population. These individuals report poor health-related quality of life (HRQL), however, interventions aimed at assisting people living with HIV to live well with CI do not currently exist and represent an important un-met need in this population.

Objective

This study aimed to identify the lived experience research priorities for improving HRQL and identify interventions to support priority areas.

Methods

A Research Advisory Group was established with 15 lived experience, academic, healthcare, and third sector professionals. Additionally, two semi-structured focus groups were undertaken, with health and third sector professionals and people living with HIV with CI. Participants were asked to rank factors impacting HRQL, identified in prior research, in terms of priority and intervention development. Findings were analysed using a combination of conventional and summative content analysis. Study findings were feedback to our Research Advisory Group.

Results

Five people living with HIV with CI, recruited through third sector agencies [Male 80%; median age 59 (range 56–78); White British 60%; homosexual 60%], and three healthcare and third sector participants (66% third sector professionals from two local HIV charities; 33% HIV-specific clinical psychologist) took part in two focus groups and ranked interventions targeting improvement in physical function, social connectedness, cognition and perceived control over cognitive health as priority areas. Findings were then fed back to the Research Advisory Group who recommended the development of an illness-specific cognitive rehabilitation programme and improved information provision as important avenues for intervention development.

Conclusion

Given the absence of meaningful patient and public involvement, intervention, and support guidelines for people living with HIV with CI, this provides a roadmap for future research in this important and growing area of HIV clinical care.

Keywords:

• HIV
• cognitive impairment
• health-related quality of life
• ageing
• intervention priorities

Introduction

Cognitive impairment (CI) presents a significant challenge for people living with HIV, manifesting at higher rates and younger ages compared to HIV-negative individuals [1]. Although severe dementia related to HIV is rare due to the success of combination antiretroviral therapy (cART), milder cognitive phenotypes now predominate [2]. Estimates indicate that ∼20% of people living with HIV have an objective CI [3], with older age being a risk factor, suggesting a potential increase in prevalence as this population ages [4]. CI in the context of HIV is often termed HIV-associated neurocognitive disorder (HAND) [5].

In the last decade however, there has been increasing recognition that the CIs seen in people living with HIV are frequently multifactorial [6]: they are not restricted to brain injury caused directly by HIV and, as such, may not be best described as purely ‘HIV-associated’ [6]. Indeed, the International HIV-Cognition Working Group has proposed a conceptual distinction between HIV-associated brain injury from other causes of brain injury occurring in people living with HIV, and a move away from quantitative neuropsychological norms-based testing to an emphasis on clinical context [7]. The CI seen in people living with HIV appear, for the majority, to be stable [8,9], but improvement in cognition is difficult to achieve [8]. Pharmaceutical interventions that directly target cognitive improvement do not exist, therefore, focusing on broader indicators of well-being, such as quality of life, may help to support individuals to live well with CI.

Quality of life is widely recognised as an essential endpoint in the management of chronic conditions like HIV. Despite significant progress in achieving viral suppression targets [10], particularly in the global North, there have been growing calls to prioritize quality of life for people living with HIV [11]. In the UK, for example, the HIV Action Plan for England 2022–2025 highlights improving quality of life and managing co-morbidities as key objectives [12]. This is not without good reason: health-related quality of life (HRQL) is consistently found to be lower in people living with HIV than those without HIV, and those with co-morbid illnesses along with HIV experience particularly low quality of life [13]. Indeed, people living with HIV and CI report lower HRQL than people living with HIV without cognitive issues and lower than people without HIV attending generic memory clinics with mild to moderate dementia [14,15]. Prior research conducted by members of the study team has identified various domains influencing HRQL which could provide targets for intervention [16,17]. These include physical functioning, cognition, social connectedness, HIV-stigma, self-concept, acceptance of and perceived control over cognitive health outcomes, and physical and mental health and well-being [16,17].

To date, much of the research in this area has focused on understanding the pathogenic mechanisms associated with impairment, clarifying the clinical relevance of the differing diagnostic criteria, and improving screening techniques for patients. These endeavours are, of course, important research areas, however comparatively little attention has been paid to maintaining or improving HRQL in those living with these problems. Community-based approaches have, however, documented a shift in patient priorities, from measuring and diagnosing CI or HAND to finding local and feasible interventions which improve HRQL and daily life [18,19]. Focusing on improving or maintaining HRQL and brain health in this group represents a current unmet need in care provisioning and we argue research in this area should be considered equitable to the areas aforementioned. Indeed, in an era where people are living longer with HIV, it is important to approach person-centred care from the perspective of maintaining or improving HRQL. Therefore, this focus on HRQL is intended to be complementary to other research efforts and is aimed at researchers who can respond through the development of their own research proposals, and for funders and policy stakeholders who can influence the availability and direction of research funding to provide interventions aimed at assisting PLWH to live well with CI. The current study utilised participatory methods to ensure the values of those with lived experience are front and centre of the recommendations produced. The purpose of this project was to identify the key research priorities to improve HRQL that will advance policy, research, and practice for people living with HIV with CI. To this end, focus groups were asked to rank research priorities to improve HRQL that were identified from research undertaken by the research team as well as wider literature [16,17,20].

Methods

A Research Advisory Group was established and composed of academics, clinicians, those with lived experience (people living with HIV with CI), and community and third sector partners. Individuals were purposely approached to join the Research Advisory Group to include a range of relevant roles and disciplines. These included: clinicians who were HIV consultants, memory assessment service managers, HIV nurse specialists, a dementia nurse specialist, occupational therapists; academics with expertise in HIV and cognitive impairment, HIV and quality of life, and dementia; and community partners from local and national HIV support services and charities, and those with lived experience (i.e. people living with HIV who have a CI or dementia).

The Research Advisory Group met twice in April 2022 to hear about prior work conducted by the study team (K.A., J.V., S.D., J.H.), discuss study objectives, and provide feedback on the findings from two focus groups which were conducted to identify areas of HRQL considered important by people living with HIV with CI.

Two focus groups were conducted: one with individuals attending a specialist community group service for people living with HIV with CI and the second with relevant healthcare professionals and community/charity sector professionals. All those people living with HIV who attended this specialist service had subjective CI and some had objective CI diagnosed. For the purpose of this study, all with subjective CI were eligible to participate. People living with HIV and CI were invited to participate by the specialist community group service lead and all participants gave written consent to participate in the research. Participants were briefly presented with HRQL domains previously identified in a qualitative study by people living with HIV with CI as important influencers on HRQL [16] (Table 1). Participants were then asked their thoughts on the domain presented, whether it felt relevant to them, whether they had any experiences of mitigating issues in this area, and finally how they think the domain could be addressed to improve the domain-specific HRQL. All participants were encouraged to and given the opportunity to contribute to each of the above questions for each domain. Finally, participants were individually asked to rank the HRQL domains presented in order of importance.

Table 1. Domains of HRQL in people living with HIV with CI [16,17].

Domain
(1) Physical function: Ability to perform normal activities of daily life
(2) Cognition: Cognitive symptoms
(3) Social connectedness: Ability and desire to form and maintain social relationships
(4) Stigma: experiences of stigma and discrimination (related to both HIV and CI) and impact on self
(5) Self-concept: Perception of self
(6) Acceptance and control over cognitive health: Acceptance and understanding of health conditions and sense of perceived control over health outcomes
(7) Physical and mental health and well-being: Broad impacts of physical and mental health conditions/concerns on evaluations of overall life appraisal

Focus groups were audio-recorded and transcribed verbatim, with care taken to anonymize references. Conventional content analysis [21] was conducted and supported by NVivo software. Line-by-line coding was conducted by KA and overseen and supported by the qualitative lead for the project (SD). Any discrepancies were discussed and resolved with the wider research team as required. Initial conventional content analysis was deductive and commenced with immersion in the data. Codes were derived from transcripts to capture key feelings about each domain discussed and possible interventions relevant to improving the HRQL domain. Codes were then refined and sorted into categories or meaningful clusters by the whole study team. Summative content analysis was used to identify the priority areas as ranked by all participants [21].

Findings were fed back to the Research Advisory Group for discussion. The Research Advisory Group provided feedback on the intervention ideas suggested by the focus groups and considered broader solutions to the individual interventions suggested, which were agreed upon and refined by the main study team (K.A., J.V., S.D., J.H.).

Results

The research priorities were created from the viewpoint of considering real-world outcomes for people living with HIV affected by and at risk of CI in the UK. It was further influenced by ambitions that are common in national HIV policies, for example, the increased focus on the quality of life and impact of co-morbidities on this, and in national dementia policies, such as the ambition to ‘live well/live better’ and access to personalised services [22,23].

The two focus groups included five people living with HIV with CI (Male 4 (80%); median age 59 (range 56–78); White British 3 (60%), Black Caribbean 1 (20%), White other 1 (20%); men who have sex with men (MSM) 3 (60%), heterosexual 1 (20%), bi-sexual 1 (20%), and three healthcare and third sector professionals [2 (66%) third sector professionals working at two local Brighton HIV charities and 1 (33%) HIV-specialist clinical psychologist]. Both focus groups confirmed the relevance of all domains presented and when asked to identify their top three, ranked interventions which target physical function (n = 8), social connectedness (n = 7), and cognition (n = 7) as being most important, two healthcare and third sector professionals ranked stigma in their top three priority areas. People living with HIV participants (n = 4) further advocated for a fourth priority area, notably, they felt acceptance and control over cognitive health outcomes should be also be included as an important target for intervention (Table 2).

Table 2. Interventions recommended by people living with HIV and healthcare and third sector professional participants to support each identified domain of HRQL.

Domain/intervention suggestion	Quote
Physical function Peer support or signposting to services (including phone apps) that can provide assistance with practical matters, e.g. financial, housing, shopping Help to maintain employment and signposting to advocates which can support this Improved engagement with those supporting people with cognitive impairment (friends/family/carer)	‘There’s some things that I can’t do and it’s maybe outside their umbrella…things that I would have done before on my own, and I don’t know who to ask for help…not family, something like that peer support’ (Person living with HIV with CI participant) ‘Mapping of what’s available, services and activities that are available in the HIV sector and then looking at the competencies of those organizations to support people with cognitive impairment’ (Professional participant)
Cognition Clarity of information presentation: easy language/presentation, particularly of health information Practical advice on different strategies that can be used to mitigate the impact of CI (e.g. compensatory strategies) along with encouragement to undertake remediation activities (e.g. hobbies that require concentration) Cognitive rehabilitation to help cope with cognitive symptoms and improve functioning Staff training on indicators of cognitive issues and greater clarity around when and how to screen individuals with HIV for CI.	‘Routine…everyday they know all the things they need to do in the morning…little reminders, practical stuff…people come up with their own stuff as well which is brilliant…and it’s having time to explore that with someone’ (Professional participant) ‘Lego…it’s marvelous…I can relax…I can really concentrate on it for like an hour…it just makes me feel good about my memory – people should be told to do these types of things’ (Person living with HIV with CI participant)
Social connectedness Mapping of available services in local area Receiving and giving peer support Access and encouragement to attend social groups (safe/non-judgemental spaces), including non-HIV groups: supporting across sectors Support to re-engage socially following cognitive impairment diagnosis	‘It affects social life…sometimes I just can’t think what they are talking about or understand…I feel like I’ve lost the plot…it puts me off getting involved, then you know I feel left out’ (Person living with HIV with CI participant) ‘People are very isolated, they’re only contact is us [once a week]…a good peer support system where they receive and when they’re ready receive is huge for confidence, purpose’ (Professional participant)
Stigma Specialist memory clinics within HIV service encourage initial help seeking. Generic memory services considered heteronormative with no awareness of HIV and intersectionality. Continued support following cognitive impairment diagnosis Improved understanding that cognitive issues are multifactorial (i.e. not only due to HIV disease), cognitive impairment is not a type of dementia, and deterioration is not inevitable. Staff training: better understanding of indicators of cognitive impairment (e.g. non-adherence can be misinterpreted) and impact of cognitive impairment on different aspects of quality of life.	‘I really think a lot about the future…who will do everything for me when he’s gone…it’s only going to get worse…like nursing care when I’m older I’m anxious about being gay’ (Person living with HIV with CI participant) ‘People don’t always know they’ve got a problem, we need to play a bit of a detective role especially with the older patients…but knowing what to look for, what it looks like…sometimes behaviours can be misinterpreted and patients are labeled wrongly, that’s stigmatized and it delays getting to the bottom of it’ (Professional participant)
Self-concept Clearer information on diagnosis and prognosis (individuals reported thinking that they had dementia, resulting in significant concerns over their future and the care they can expect to receive as someone living with HIV) More information and assistance on developing strategies to enable continued functioning Positively framed information Help planning for older age Opportunities to socialise without other people living with HIV with CI of a similar age (particularly relevant for those in residential care settings)	‘Information you know…once they have an idea about what’s going on…the fact that things are quite stable, they can adapt and adjust and that’s quite powerful for them’ (Professional participant)’ ‘[about being] more optimistic, I get a kick up the bum if I start thinking about things that are going wrong…[I] need to think about what I can do…I think maybe that might be an idea for all of us to take on board’ (Person living with HIV with CI participant)
Acceptance and perceived control over cognitive health Clearer information on what cognitive impairment is and its causes in those living with HIV (to facilitate understanding of the condition) Information on how to support good cognitive health for all people living with HIV Clear and written management plan Collaborative development of strategies to mitigate CI impact and support personalised goals Staff with knowledge of cognitive impairment in the context of HIV	‘I can’t pinpoint why? Is it the medication, is it something else, so it would be useful to know [what causes this]’ (Person living with HIV with CI participant) ‘[I] just want more info, you get little bits here and there but its small, and I don’t fit in the normal dementia category, so finding stuff about that’s relevant to me and what I have going on is a pain’ (Person living with HIV with CI participant) ‘Something to help us really, so we can improve our memories. I don’t think I’ve had anything…I don’t know if there are things to help…like resources to maintain my cognitive abilities’ (Person living with HIV with CI participant)
Physical and mental health and well-being Continued support and signposting following diagnosis Clear, well communicated, and written management plan Access to different levels of information on cognitive impairment in people living with HIV Improved communication between services Mapping of local services and organisations Access to mental health self-help remediation strategies Knowledgeable staff	‘More information and awareness about the multifactorial sort of characteristics of cognitive difficulties and how people can help themselves…and other healthcare individuals …able to address those issues…could be incredibly useful…and has been really, really empowering’ (Professional participant)

Research priorities

Research priority 1: Physical function

Participants highlighted the importance of interventions that address issues related to physical functioning, which is defined as the ability to perform normal activities of daily living. They described difficulties managing complex activities of daily living, such as managing finances, housing, and organising shopping. Individuals described lacking confidence in making decisions due to previous mistakes. Both groups stated the importance of ensuring (if available) key family/friend/carers are involved in the patients care, kept updated about their health, and supported by services. Professional participants stated the possible un-tapped benefits personal assistant style applications could have, particularly regarding financial management. Additionally, both groups identified the value of peer support and the importance of generating awareness and signposting to support services locally. This included employment services which can assist and advocate for individuals.

Research priority 2: Cognition

All participants discussed the impact of cognitive symptoms directly and stated the need for interventions that directly improve cognitive function (cognitive rehabilitation) and/or interventions that offer compensatory and/or remediation strategies. People living with HIV participants reported issues typical of those with cognitive impairment (e.g. problems with short-term memory, concentration, and articulating oneself) and described the memory strategies they employ to mitigate these challenges. This included dosage boxes, diaries, calendars, and alarms. Additionally, individuals emphasised the importance of text reminders for all medical appointments, something not routinely provided by many non-HIV services. People living with HIV participants described the value of having a hobby, like Lego or quilting, and how perceived ‘success’ in this conferred a positive association with cognition and improved well-being. Interestingly, many patient participants described feeling confused by what CI actually was, whether it was something that was degenerative or could possibly be improved, and how it was linked to having HIV, taking HIV medications, and ageing. Individuals wanted more information on their diagnosis and how to protect or maintain their cognitive health going forward.

Research priority 3: Social connectedness

Key to improving wellbeing and HRQL, identified by both groups, were interventions targeting improvement in social connection and support with social engagement. Patient participants described a process of social withdrawal following the onset of cognitive symptoms and both patient and professional participants identified the need for more support and signposting following diagnosis. People living with HIV participants all described the benefits of attending a specialist memory groups. Individuals described the comradery and social confidence gained from being with others in a similar position to themselves, and how the reciprocity of peer-support improved well-being. Additionally, a number of those discussed how attending the group helped to ‘get them out the house’. Professional participants reported similar benefits seen in patients attending support or social group, however, they highlighted difficulties in finding out about local services, and how this is a significant barrier to improved social engagement in this population.

Research priority 4: Control over cognitive health

Issues related to control over cognitive health were ranked as a research priority by people living with HIV participants. Individuals described struggling to understand their diagnosis, feeling unsure as to what had or was causing it, and felt like they had little understanding as to how to support and or preserve their cognitive function. People living with HIV participants stated clearer information following diagnosis would be helpful. It was suggested that this should include a clear management plan, written for patients, in lay language, incorporating regular monitoring and access to specialists who can help them to develop coping strategies to lessen the impact of their impairments. People living with HIV participants further requested information is delivered in a written format (to aid memory) and provides individualised information on causation and prognosis to facilitate understanding of issues and longer-term outcomes. Additionally, People living with HIV participants reported having little awareness of lifestyle modifications associated with good cognitive health and wanted information on how to support and protect their cognitive health from further deterioration. This included HIV-specific information and advice on maintaining cognitive health when ageing with HIV. Similarly, professional participants corroborated this and reported that improvements in health literacy around cognitive health in this patient group could promote all-round health and improve self-efficacy as individuals age. Additionally, professional participants described the need for staff training in both HIV services and generic memory services. Specifically, professional participants felt that cognitive issues were sometimes missed in HIV services, with staff misidentifying consequences such forgetting to take cART, as an individual being treatment adverse or non-compliant. More broadly, professional participants stated that additional training would be beneficial for staff in generic memory services, who were perceived to hold little knowledge of the pathological causes of CI in people living with HIV and to be generally ill-informed when advising patients on how to manage CI and living with HIV, and have less awareness when it comes to the psychosocial intersections (e.g. homosexual, black African, single, stigma, mental health issues, drug or alcohol misuses, poverty) with which people living with HIV frequently present.

Intervention development avenues

Based on the priority domains identified from the focus groups and the intervention recommendations across the four key research priority areas, the Research Advisory Group has identified two broad interventional strategies that could be developed to assist people living with HIV to live well with CI.

Intervention development area one: Cognitive rehabilitation interventions

Cognitive rehabilitation refers to a type of intervention that aims to improve a person’s ability to perform cognitive tasks by retraining previously learned skills and teaching compensatory strategies [24]. Interventions are inherently person-centred, acknowledging that each person’s combination of life experience, motivation, values, preferences, skills, and needs is unique and views the person holistically, taking account of the person’s relationships and environment.

Restorative cognitive rehabilitation interventions aim to directly restore the impaired function of patients and include (cognitive) domain-specific interventions and interventions for generalised CI. A systematic review of restorative cognitive rehabilitation interventions all (n = 7) documented modest improvements in cognition, however, none found meaningful improvements in other outcomes assessed, such as functional ability or quality of life [25]. Therefore, suggesting they yield poor translation into a ‘real-world’ or meaningful gain for patients. Another form of cognitive rehabilitation is considered compensatory and helps individuals to adapt to their external environment and improve the patient’s ability to use aids and tools to overcome impairment. We found no reports of any compensatory cognitive rehabilitation interventions to help people living with HIV live well with cognitive impairment. However, given the research priorities identified in this study, the development of a compensatory form of cognitive rehabilitation for people living with HIV could be helpful in addressing, not only the functional research priority identified, but may also help individuals cope with the impact of their cognitive symptoms (research priority 2) and develop compensatory strategies which improve perceived control over cognitive health (research priority 4). Additionally, because cognitive rehabilitation of this type is flexible it allows individuals to work on the goals that are important to them and takes into account the social determinant of health and diversity of population related to gender, social roles, age, ethnicity, culture, length of time living with HIV, geographic location and access to health services. This diversity in people living with HIV was highlighted by both patient and professional focus groups, with both identifying the importance that any intervention considered, needing to be able to address the intersecting physical, social, and mental health outcomes of disability experienced by people living with HIV with CI.

Finally, patient participants in this study and in our prior qualitative study [16] discussed the shifting of self-concept, and specifically how lower self-esteem and loss of confidence, has impacted their willingness to socialise and led to withdrawal. As cognitive rehabilitation is person-centred and driven by goals identified by the patient, it is able to reduce excess or unnecessary disability resulting from secondary consequences, like a loss of confidence. This is achieved by working with people on the goals that are important to them and that will make a difference in their daily lives, including improving social connectedness (research priority 3).

Intervention development area two: Information provision

Our Research Advisory Group, in tandem with participants both focus groups identified improved information provision to be a key intervention objective. Individuals report frequent ambiguity and confusion regarding the meaning, causes, diagnosis, and prognosis of cognitive impairment and a lack of knowledge on how to support and maintain cognitive health. This paucity of knowledge increases the stigma around HIV and CI, effects an individuals’ ability discuss their health with friends and family, and attenuates a sense of control or self-efficacy over cognitive health outcomes. This, in turn, impacts on mental and physical health [4]. Information provision could include booklets/websites for staff and patients containing information on causes of CI in people living with HIV, prognosis, and guidance on maintaining good cognitive health; staff training (particularly in generic memory services); and mapping of local community services providing peer support, social groups, and advocacy.

The development of tailored information provision would target control over cognitive health (Research priority 4) by providing patients and staff with clear, detailed information on the issues aforementioned. Additionally, a mapping of local services and charity organisations, would likely improve social connectedness (research priority 3). This would further support findings from our previous studies [16,17], which reported high levels of social isolation and found, for many people living with HIV with CI, a preference towards attending HIV and/or cognitive impairment specific social groups and events. Notably, the people living with HIV participants in this study were recruited from one such group, held at a local HIV charity organisation, and all described the value they gain from attending this group. All stated it is one of the only opportunities they have to socialise and ‘get out the house’ each week. Awareness of local charities, support groups, and services is particularly important for people living with HIV with cognitive difficulties as they are more likely to live alone and experience other socioeconomic difficulties [26].

Discussion

This study is the first to identify research priorities and potential interventional strategies for improving or maintaining HRQL in people living with HIV experiencing CI. Given the absence of interventions and support guidelines for people living with HIV with CI, our findings offer valuable insights and provide a roadmap for future research in this largely unexplored area of HIV clinical care. The identified priorities emerged from diverse perspectives including an international group of researchers, clinicians, people living with HIV with CI, and representatives of community-based organisations, and emphasised real-world outcomes important to patients.

Two main areas for intervention development were highlighted: HIV-specific compensatory cognitive rehabilitation and improved information provision. Despite directives from the British HIV Association (BHIVA) [27] regarding the provision of rehabilitation strategies for people living with HIV, illness-specific interventions are lacking. Moreover, a recent survey of UK HIV clinics found that 48% of HIV services have no demarcated support pathway for patients with CI [28]. Instead, patients with CI are often directed to generic memory assessment, psychological services, and cognitive rehabilitation programmes that may not adequately address the unique needs of HIV populations. This includes unique needs and intersectionality—high rates of mental illness and social isolation, chronic illnesses, stigma (self-stigma, expected stigma, experienced stigma), health disparities, and marginalised populations. Cognitive rehabilitation interventions for those with mild to moderate dementia which target functional ability have yielded real-world improvements by focusing on reducing functional disability and maximising engagement in activity and social participation [29]. An HIV-adapted cognitive rehabilitation intervention could offer tangible benefits by targeting functional ability and promoting engagement in activities and social participation, aligning with the principles of person-centered HIV care [30]. This recommendation aligns with another participatory-based research study which has documented the importance of psychosocial support-based interventions to reduce the stress, anxiety, and poor coping associated with cognitive issues in people living with HIV [31,32]. Indeed, Eaton et al., based on consultation with stakeholders (including those with lived experience), have developed a blended intervention involving psychosocial support and cognitive remediation group training. In this pilot, their intervention demonstrated better or equal results to mutual aid on outcomes of feasibility, acceptability, fidelity, stress, anxiety, coping, mindfulness, and brain training exercises [31]. To date, the vast majority of cognitive rehabilitation research has primarily trialed existing cognitive rehabilitation interventions in those living with HIV with CI, with computerized cognitive training (CCT) by far the most common intervention approach [33]. CCT consists of exercises designed to target and improve specific cognitive domains, such as speed of processing or executive function. A recent meta-analysis of pooled data found CCT was associated with improvements in multiple cognitive domains in those with HIV. However, few studies found this translated into improved daily function and, in those which did report this, improvements were not sustained more than 3 months post-intervention [33].

Information provision emerged as another critical intervention priority, echoing findings from previous studies [16,34]. Ambiguity and confusion surrounding the causes, diagnosis, and prognosis of cognitive impairment contribute to stigma, hinder discussions about health with friends and family, and diminish perceptions of control over cognitive health outcomes. Uncertainty over health has emerged in other consultations as a priority area in HIV and ageing research, and strongly predicts mental health and social inclusion challenges as an individual age with HIV [35]. Clearer understanding and guidance for both people living with HIV and HCP on maintaining cognitive health represent a significant unmet need: current resources are often generic (e.g. developed for non-HIV populations) or lack comprehensiveness in addressing HIV-specific concerns. This is particularly salient given that age is a primary risk factor for the development of cognitive issues [6] and as of 2022 almost half (49.8%) of individuals accessing HIV care were aged 50 or over [10].

The strength of this study lies in its community-engagement approaches involving diverse perspectives including those with lived experience in the consultation and identification of priority areas for intervention. This is particularly important given studies indicating priority differences between professional and patient groups [36]. However, the small sample size may limit the generalizability of findings, and the absence of a formal Delphi process raises questions about the reliability of identified priorities. One particular priority that may have arisen had more women been involved in the focus groups is the role the menopause appears to play in CI and the difficulties many women with HIV face with regard to its treatment and management [37]. Future research should consider identifying research priorities in this area of HIV care from regions with differing HIV treatment resources and priorities, where HIV burden is highest, whilst incorporating formal consensus-building methods and greater diversity in participant representation.

Geographical location

This project was conducted in the South-East of England.

Ethical approval

This study was approved by the UK Health Research Authority (HRA) and Health and Social Care Research Ethics Committee (REC) A.

Acknowledgements

We would like to thank all those who participated in this project, along with our Research Advisory Group members. These included Mr. Roger Peabody, Dr. Sam Nightingale, Mr. Gary Pargeter, Ms. Fran Hamilton, Ms. Melanie Martin, Ms. Alison Keizer, Dr. Simon Rackshaw, Mr. Andrew Wilson, Mr. Alan Spinks, Mr. Jason Wilcox, and Ms. Fungai Murai.

Disclosure statement

KA has received research grants from Gilead Sciences and been an investigator in trials funded by Gilead Sciences and ViiV Healthcare. JHV has received honoraria and research grants, been a consultant or investigator in trials sponsored by Merck, Janssen Cilag, Piramal, and Gilead sciences. He has received sponsorship to attend scientific conferences from Janssen Cilag, Gilead Sciences, and AbbVie. JH and SD declare no conflicts of interest.

Data availability statement

The data that support the findings of this study are available from the corresponding author [KA], upon reasonable request.

Additional information

Funding

This study was funded by the University of Sussex Healthy Ageing Grant.