A case finding pathway for frailty in people living with HIV
Research type
Research Study
Full title
A case finding pathway for frailty in older people living with HIV: a qualitative study
IRAS ID
271763
Contact name
Jaime Vera
Contact email
Sponsor organisation
Elton John Research Centre
Duration of Study in the UK
1 years, 4 months, 11 days
Research summary
Research Summary
Thanks to the success of antiretroviral therapy, people living with HIV (PLWH) are living to older ages. This ageing is bringing to light new health problems and challenges , including frailty. Frailty is a loss of internal reserve that a person has to withstand health stresses. It is more common in those with HIV and occurs earlier than we see in the general population. Guidance now recommends screening for frailty but the best and most acceptable way to do this is unknown.
We aim to develop a case finding pathway for frailty in older people living with HIV (PLWH.) This pathway must be acceptable to the population, and be user-friendly, efficient and effective for the Health Care Professionals (HCPs.) This study will use the results of qualitative analysis from focus groups with both older PLWH and HCPs to identify when, how, where and with which tools and vocabulary to case find for frailty in PLWH. We have a series of complex and dynamic interventions for frailty and pre-frailty . This will help us to detect frailty (and frailty precursors) early, which will enable us to use the interventions that we have to prevent morbidity and mortality and maximise healthcare utilisation.
Summary of Results
: A case finding pathway for frailty in people living with HIV Iras ID: 271763 REC reference: 20/WM/0110 Who carried out the study and when?
The interviews and focus group discussions were carried out by Natalie St Clair-Sullivan, a research assistant and PhD student and Dr Daniel Trotman, King’s College Hospital. Analysis of the research data was conducted by Natalie St Clair-Sullivan and four members of the study team (Dr Katherine Bristowe, Dr Mathew Maddocks, Professor Richard Harding, Professor Jaime Vera). The lead researcher was Professor Jaime Vera, there were no conflicts of interest and the study was funded by the British HIV Association, and The National Institute for Health and Care Research, Research for Patient Benefit programme. The study was sponsored by University Hospitals Sussex NHS Foundation Trust and they and the study team would like to thank everyone who took part. The study commenced in April 2021 and ended in September 2021.Patient and public involvement
Our patient and public involvement member is a person living with HIV, who works with multiple HIV voluntary organisations. They are also a member of the HIV fast track cities initiative task force, a global initiative to expand HIV services and improve access to testing and treatment. They have also received several awards for their work with the HIV community. They have been involved in:
• The research application
• Design of the study material such as the interview topic guides, recruitment of participants.
• Sharing the study findings through community HIV groups across England.What is the problem?
People with HIV are living to older ages thanks to effective HIV care and treatments. However, many are experiencing ageing-related health problems. These include frailty (being less able to recover from illness or injury), weakness and falls. They also have trouble with day-to-day activities. These are common problems for older people. However, for people living with HIV, they are happening at younger ages.Why do we need to do something about it?
People living with HIV have ageing related problems as young as 50. Approximately 98,552 people living with HIV are using HIV services in the UK and 39% of those are now aged 50 and over. Experts in elderly care, known as geriatricians, are specialists in managing these problems. Whilst there is no strict definition, someone over the age of 65 may be considered an older person and consequently people living with HIV may not be able to see these specialists, as they are too young. Therefore, they may not receive the care that they need.
Older people with HIV have many health problems requiring different medications. They may also have difficulties managing day-to-day. Services designed for older people with HIV are needed. However, it is not known if people living with HIV are willing to be screened for frailty and how they feel about the introduction of frailty and geriatric care as part of HIV services.
Therefore, the aim of this study was to explore how people living with HIV and HIV professionals, feel about frailty and screening for frailty within HIV services.Where did the study take place?
• People living with HIV were recruited from two outpatient HIV clinics in Brighton and London.
• One person was interviewed face to face, at their usual place of HIV care
• All other people living with HIV were interviewed via telephone or video call.
• HIV professionals participated in focus group discussions at their usual place of work.Who took part in the study?
• 45 people living with HIV, 50 years and over.
• 12 professionals who provide care for people living with HIV, consisting of doctors, nurses, receptionists, and administrative staff.What happened during the study?
• People living with HIV took part in one individual interview. They were asked about:
o What frailty means to them
o The language used when speaking about frailty
o What their thoughts were about screening for frailty and the tools healthcare professional use to do this.
o What they thought about frailty services.
o All were offered a £10 voucher for taking part.
• HIV professionals took part in a focus group discussion. They were asked about:
o What frailty means to them and their experiences of it within their day-to-day care of people living with HIV.
o How they spoke about frailty with patients and the language they used.
o Their experiences of frailty screening and care in their current HIV services.What did the results of the study show?
As this is study is what’s known as a ‘qualitative’ study, there are no statistics or numbers included in the results. The results of the study show that participants described frailty as a series of losses. Losses of mobility, robustness, independence and physical or mental wellbeing. Participants felt that frailty could happen at any age, although there was a clear difference between frailty that was because of old age and frailty that was because a person was experiencing poor physical or mental health.
Participants felt that the language used when speaking about frailty was very important. It should be sensitive, respectful and easy to understand. People living with HIV and HIV professionals had different opinions on whether the word ‘frail’ should be used. People living with HIV felt it was important to use the word, so that it was clear what they were being told. Professionals said that they did not always use the word frail, because they thought it may upset patients.
People living with HIV were willing to be screened for frailty and receive frailty care as part of HIV services. Professionals felt this may be difficult, due to time limitations. People living with HIV wanted to know if they were frail. They wanted this information to be told to them alongside information on what services where available to them and a clear plan in the next steps of their care.How will the results of this study help patients and researchers?
The results of this study will provide HIV professionals with information about how to speak about frailty with their patients, prioritising being positive and reassuring. It also provides them with further knowledge on how to develop frailty services and care within HIV services. This will then contribute towards improving healthcare experiences for people living with HIV. This summary only shows the results from this one study. Other studies may find different results.Are further studies planned?
Currently a further study is being conducted to better understand how to provide services for people living with HIV and frailty. We have developed services in our clinic that may help people who are living with HIV and frailty. In this study, we are focussing on the ‘Silver Clinic’, in Brighton. The Silver Clinic is a multi-disciplinary HIV ageing clinic, that assesses and manages age-related problems in people living with HIV. The results of both studies will be combined to provide recommendations and guidelines to improve care for people living with HIV and frailty.Where can I learn more about the study?
You can find details about this study at: https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fu2790089.ct.sendgrid.net%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbZk52HXJKF150up5z-2FbBA9D4-2FIPSqnvegeT6XtSJJXU8SnHC89itag8b9SyNel-2FgXyAxJF3rU5BnP7vGBpauvi9ToX3QZuu8iE9rsmRg06zKTn-2FNGNzC2rzis51uIzPUGs29acopn1pihKFFi-2F72vvcVs-2FXxer3C8caBaGoJIn7bjFRi6uXRc6j1SM-2FRImfm5m2w473UajIMIduljji9iBQ-3DDDpZ_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YK8HsorFo6nztix9MTlCRS5hPKZPXw-2FZQaWU-2FP484u-2FaafDRxqfZT7d-2BmdZ9-2F9NkD3-2BZROowLlX2KCGu0CiEj2OXP-2BeJusOiIpny8kYYZxF9EJZuDqgVbk13PgrhLfEit8h8y05rkbf-2F1hOCARgDc0vVtyysrUWT-2BEt-2FPDgvYtUcA-3D-3D&data=05%7C01%7Capprovals%40hra.nhs.uk%7C160ce8df140d4a97c14f08da9ad09e25%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637992518039691795%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=aZHBw1E%2B0IhgvSKiSXwUUTIPQ5RJa%2FUKza5uS1l5rUs%3D&reserved=0
You can also find more details about this study at:
https://eur03.safelinks.protection.outlook.com/?url=https%3A%2F%2Fu2790089.ct.sendgrid.net%2Fls%2Fclick%3Fupn%3DXv3JSvJ-2B3M71ppf7N9agbQdQcEbnG8lhknDpUrUZF-2BmF-2BYyXwwarnx2ZEqzn6ww3QV-2FtF9y8ur5yj-2BJZjaLCbbVl7riBq5PXd-2F764fVr-2BGiAvGld41HYhcasmkrHu0P4WzTQfmPTRiuezsIBLteAPec2ToO2CcRJReHAbTohskqI3czjFKKqbYjq2nEsOmYt7ThdvMKuyf8kE6mGlmkoQGo-2FWEvvVpqqw2Wid-2F-2BUe6o1d52L6NG7Vc5BFc5NkGYmnPNAB8fkBoLlsvrsteem3Y7ha5b0p65PilS-2B3vTArnI-3DYqEz_E1aO2-2BZlVOSJJV-2FajQqskegTd6IRomHYTi-2Fbt8SH3YK8HsorFo6nztix9MTlCRS54dPIH0a5nYHsXn77W9yG8zSAWlHUhO9h6IMknbdqynWetZOGtFpABBl8O7xyQsCb6jOA1X0UQg8V-2BL6jMQSE9G57i23rcxyFnkdMnAGUbZdK6WOMicMtRiwVW31eB4hC2jUZWfAxoxoCvALlYMvObA-3D-3D&data=05%7C01%7Capprovals%40hra.nhs.uk%7C160ce8df140d4a97c14f08da9ad09e25%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C637992518039691795%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=OPV%2BW%2FsKqBR5ZLriQaWrSlKmsCTDV%2B68yM4sRWj7CFk%3D&reserved=0
The results of this study have been submitted to an HIV journal and are currently under review for publishing, which will then be available for all to access online. Participants who requested a summary of the study results will be forwarded it via their chosen delivery method.REC name
West Midlands - Black Country Research Ethics Committee
REC reference
20/WM/0110
Date of REC Opinion
30 Apr 2020
REC opinion
Further Information Favourable Opinion