Foreword

The fact that we are developing guidance centred on the ageing of individuals living with HIV is testament to the success and dedication of scientists, clinicians and patient advocates in getting HIV care to where it is today. Antiretroviral therapy has improved the survival, and thus life expectancy, of those that take it. However, it alone is not sufficient to ensure that all people living with HIV have the opportunity to age well. Barriers to successful ageing include uncontrolled medical comorbidities, frailty, adverse behavioural risk factors and psychosocial problems, including HIV-related stigma and negative socioeconomic circumstances.

Observational studies point to an excess of age-related comorbidities in people living with HIV, occurring in some circumstances at earlier ages than we might see in the general population. Frailty is one such problem, and it may help identify those who are most likely to need enhanced input from health, social and community services.

Frailty, alongside other age-related issues such as falls, mobility decline and cognitive impairment, may be less familiar to those working in HIV services compared to those of us who deal with older adults more regularly in our professional lives. HIV treatment and monitoring guidance is beginning to reflect these issues, yet the supporting ‘how to’ approach is lacking. HIV services have always been adaptable to the changing needs of their users, with some creating pathways or clinics dedicated to age-related issues where there is sufficient user demand or where those living with HIV fall between the gaps of existing frailty services.

There is no one-size-fits-all approach here, and a lack of HIV-specific tools and clinically applicable research means the evidence base is in its infancy. However, frailty has consequences and is potentially reversible, so early identification and intervention is key. Through this document, we have aimed to provide an accessible guide to support and empower those working in HIV to identify and manage individuals living with frailty and HIV. It is by no means exhaustive, but we have tried to signpost to other resources along the way, which you may wish to complement with the help of a friendly local geriatrician!

Dr Tom Levett
Senior Lecturer in Medicine and Frailty, Brighton and Sussex Medical School Honorary Consultant Geriatrician, Royal Sussex County Hospital, Brighton
Co-lead of the Brighton joint HIV-ageing ‘Silver’ Clinic
“..a much-needed resource enabling practitioners to consider how people living with HIV are managing their physical, psychological and social well-being as they are getting older. The FRAIL in HIV framework allows us to quickly assess people in a comprehensive manner encouraging conversations to develop further with people around prevention and care strategies. Without being prescriptive, this document provides a variety of tools, resources and suggestions for frailty assessments and models of care which will allow a flexible approach to our local service delivery and improvement for patients.”
Justine Mellor
Advanced Clinical Practitioner in HIV and Sexual Health, Manchester University NHS Foundation Trust, Manchester

Acknowledgements

This guide was funded by Gilead Sciences Ltd and co-created between the Gilead Sciences HIV Standards Support Team, Cuttsy+Cuttsy and the following healthcare professionals who we thank for their expertise, guidance and feedback in the development of this content:

Dr Tom Levett, Consultant Geriatrician with a special interest in HIV and Ageing, University Hospitals Sussex NHS Foundation Trust, Brighton

Prof. Marta Boffito, HIV Consultant, Chelsea & Westminster Hospital NHS Foundation Trust, London

Dr Tristan Barber, HIV Consultant, Ian Charleson Day Centre, Royal Free London NHS Foundation Trust, London; Institute for Global Health, University College London, London

Darren Brown, HIV Specialist Physiotherapist, Chelsea & Westminster Hospital NHS Foundation Trust, Therapies Department, London

Jill Williams, Community HIV Clinics Nurse Specialist, Liverpool University Hospitals NHS Foundation Trust, Liverpool

Nicola Galbraith, HIV Standards Support Team Manager, Gilead Sciences

Philippa Pristerà, Patient Engagement Strategy Lead, Cuttsy+Cuttsy

We are also extremely grateful to the following individuals for providing valuable contributions and feedback during the initial qualitative research phase for the development of this guide and/or on final iterations of this document:

Garry Brough, HIV Advocate, Lead for Peer Learning, Partnerships & Policy, Positively UK

Memory Sachikonye, HIV Advocate, UK-CAB Coordinator, HIV i-Base

Justine Mellor, Advanced Clinical Practitioner in HIV and Sexual Health, Manchester University NHS Foundation Trust

Breda Patterson, National Market Access Senior Manager HIV, Gilead Sciences Ltd

Further details of how the guide was developed are outlined in Appendix 1.
Within this guide, we have developed the FRAIL in HIV framework. This builds off the FRAIL scale that is recommended by EACS to be used as a screening tool for frailty in people living with HIV (though not yet validated in this population). As such the framework has not been validated in any population and is not endorsed by any professional organisation.

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