Getting services ready
Education and training
Education and training will be critical to ensure everyone who supports individuals living with HIV has the skills, knowledge and confidence to play a part in identifying and/or managing frailty.
Further training and resources:
How people view the concept of frailty outside of the clinic is often very different to how it’s defined within tools and questioning. Research has shown that even in the absence of HIV, older people in their 60s and 70s do not use or relate to the term ‘frail’ or ‘living with frailty’, which can act as a barrier to people engaging with the care and services they need.41 For many, the word ‘frail’ conjures images of someone in an ‘irreversible state’ who’s approaching the end of their lives. This is an image we need to change.
Regardless of age, it means great care should be taken when identifying and assessing signs of frailty among people living with HIV. The term ‘living with frailty’ shouldn’t be avoided if physical frailty is identified. However, describing someone as living with frailty should be delayed until when it is necessary, and then appropriately contextualised and explained.
For example…
Initial conversations and referring for screening or assessment
Introducing ideas about increased complexity in someone’s life, or factors that may limit their ability to live or age well, are preferred for initial discussions, e.g.:
Introducing ‘frailty’
If someone is going to see the term ‘frailty’, for example, on a questionnaire, or if you identify possible signs of frailty during a screen, it’s best to be open and transparent. Help people understand why checks are being done or requested and what happens next, e.g.:
Informing someone they’re ‘living with frailty’
Never label someone as ‘frail’ — it is not a single or irreversible state that defines someone. It has also been suggested that the concept of ‘living with frailty’ may be more positively framed if you consider using ‘experiencing frailty’ in your communications. While you may say that someone is ‘experiencing frailty’, it is important to remember that the experience for the individual will be more about living with a number of difficulties that are affecting their daily life. Make sure they understand that it can be managed and reversed, and what the next steps are to achieve this, e.g.:
Making the most of existing services
Many of the services and skills needed to support frailty diagnosis and management already exist but may not be well-connected or integrated with HIV services. While ideal to deliver frailty services in-house, this isn’t always feasible. Therefore, building connections with external services is important to ensure referral pathways are in place for people to receive timely assessment and support.
Conducting ‘grand rounds’ of cases, and enabling geriatricians and other professionals to sit in on consultations and assessments, can help to build awareness of the issues and may help to gain agreement on referral pathways or models of care.
Capture the perspectives of nurses on the frailty needs of the community and involve them in guiding what provisions and pathways are needed. They are often well-placed to identify and share hidden risk factors and vulnerabilities.
Use example case studies to start conversations with external teams so you don’t need to wait for a frailty case to get referral processes underway.
To support services in building care pathways, you may want to consider nominating a ‘frailty champion’ within your service.
Having a dedicated point-of-contact that maintains and/or builds a database and acts as point of contact to signpost and communicate or coordinate services will help to ensure people receive timely support. It could also be a service improvement project.
An HIV consultant, nurse, healthcare assistant, or any member of staff with an interest in frailty.
Service planning
Services with older or more complex cohorts, and those in areas of greater socioeconomic deprivation, may need greater support to meet individuals’ needs over the next 20 years. Frailty in people living with HIV may not be a long-term problem as the overall burden of medication and morbidities during a person’s lifetime reduces with improved treatment and care. But it’s important that the future needs are planned for now to ensure they can be met in the future.
- What proportion are aged 50 or over?
- How complex on average are the cases you see?
- What is the overall level of sociodemographic deprivation?
- Identify and connect with primary/community, secondary and tertiary services. Ensure there is a shared understanding of the need and discussion around the best approach to manage care
- Consider how the services are configured. For example, some may involve a virtual MDT that you can feed into
- Ideally you may want to deliver a frailty service provision within or via HIV care, but if not possible, gain agreement on optimal referral processes
- Investing time in identifying and managing physical frailty can help to keep people independent and robust, which in turn helps to reduce the burden on the healthcare system
- It’s therefore possible to build a business case for further resource and support on the basis that having access to a geriatrician, physiotherapist, occupational therapist or additional care coordinator, for example, will be valuable in supporting people to age successfully
- With the view that ‘if you’re not counted, you don’t count’, useful data to collect and monitor among people living with HIV include:
- ~Number of people screened and assessed for, and diagnosed with, frailty (and pre-frailty, if assessed)
- ~Methods of identifying frailty e.g., subjective or objective measures; ‘random’ case findings or standardised screening
- ~Mood/cognition screening tools used
- ~Methods of assessing activities of daily living, physical frailty, comorbidities and polypharmacy; reasons for not assessing such factors
- ~Number of people referred to internal or external services or clinics and interventions offered
- ~Outcome of pre-frailty and frailty cases
- ~Number of hospital admissions
- ~Number of case co-morbidities
- ~Number with formal vs. informal care needs
- ~Fall rates
Frailty is not a term that many people relate to, particularly those under the age of 65. Concepts about growing complexity are preferred but don’t avoid saying ‘frailty’ if it’s needed, just remember to provide explanations when it is used.
Where identified, frailty should be listed and treated as any long-term condition, through risk factor management and patient optimisation.
Services with older or more complex cohorts should take steps to ensure they are adequately prepared to meet the growing needs of their community.
Gathering information around the prevalence of and pathways for frailty within HIV services will provide an important evidence base that could inform future tools and models of care, support a business case for further funding and/or specialist representation.
