NICE acknowledge that the Clinical Frailty Scale (CFS) should not be used in younger people, people with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism. An individualised assessment is recommended in all cases where the CFS is not appropriate.
Following my COVID-19 update published on the 27th March 2020. I was contacted by a number of specialist learning disability physiotherapists from around England providing feedback about how their services are managing the COVID-19 pandemic. It has been reassuring to hear that their approaches have been in line with the recent ACPPLD National Executive Committ e response to the COVID -19 pandemic March 2020 (https://acppld.csp.org.uk/news/2020-04-06-acppld-national-executive-committee-response-covid-19-pandemic-march-2020); and that specialist services in their locality have been retained to monitor and manage adults with a learning disability during the pandemic. All be it with reduced staffing levels either due to sickness or redeployment.
I was also contacted by Dr Ingrid Wilkinson Hart, Lead Physiotherapist, from Wiltshire Community Team for People with Learning Disabilities. Dr Wilkinson Hart contacted NICE following their update of the COVID-19 rapid guideline: critical care in adults (NICE guideline [NG159]) which recognised the issues with frailty assessment in younger people, people with stable long-term disabilities (for example, cerebral palsy), learning disabilities or autism. NICE now state that:
An individualised assessment is recommended in all cases where the Clinical Frailty Scale is not appropriate.
Although, the change is welcome. As a result, important decisions about eligibility for and access to critical care treatment are open to some subjectivity. This is a particular concern during the COVID-19 pandemic considering that assessments are likely to be made by inexperienced and over-worked clinicians in emotive and stressful environments and situations, without sufficient time to be able to complete comprehensive assessments. To compound this, getting the information from the person with a learning disability may not be possible; and they may not be supported to hospital by their network of care to advocate on their behalf. This increases the risk of misdiagnosis; judgements being made about quality of life; delays and refusals in treatment; and diagnostic overshadowing.
Despite this, an assessment of frailty has been recommended by NICE to inform clinical decisions about access to critical care treatment during the COVID-19 pandemic. The common assessments of frailty in people over the age of 65 include Clinical Frailty Scale, Gait Speed Test, Timed up and Go Test and Frailty phenotype. These assessments take into consideration age, physical abilities and dependence on care when assessing level of frailty which are not appropriate for adults with a learning disability.
There is a specific tool that assesses frailty in adults with a learning disability over the age of 50 which has been well researched. The Frailty Index for older people with intellectual disabilities was developed by Schoufour et al. (2013) from conducting a large cohort study using multiple outcome measures to track health over time. The researcher's identified 51 items that they used to construct the Frailty Index. These include a broad spectrum of objective measurements, informant reports, and medical information. The Frailty Index is scored between 0 (no deficits present) and 1 (all deficits present). A high frailty index has been associated with premature death and greater care needs. Furthermore, the researcher compared their results to previous studies among non-disabled populations and found the mean Frailty Index score was higher in older adults with a learning disability and that frailty, on average, started at a much younger age when compared to the general public.
Frailty index for older people with intellectual disabilities – Schoufour et al. 2013
The main limitation to using the Frailty Index during the COVID-19 pandemic is feasibility of completing a 51 item assessment when time and non-essential contact is limited. Many of the items can be completed subjectively through proxy reporting or reviewing past medical history; but some require physical assessment and clinical examination. A valid indication of frailty can be achieved with data from a minimum of 30 items which could be achieved without the need for direct clinical contact. Therefore, it may be possible to reduce the tool during the pandemic so that it can be completed in the community by families, care providers and health professionals to accurately assess frailty before a potential admission to acute hospital. Thus, providing an objective measure of frailty to base decisions about eligibility for critical care treatment.
Another potential limitation of the Frailty Index is that the majority of research has been conducted on adults with a learning disability over the age of 50. One study included adults over the age of 45 years old. Therefore, the tool has limited application for younger populations who are at high risk of serious illness and poor outcomes from COVID-19 due to multi-morbidities, complex physical disability and respiratory problems. However, these individuals tend to be more easily identifiable; are already recognised as clinically extremely vulnerable; and are being ‘shielded’ by their network of care. Thus, the Frailty Index may be helpful to identity people that are less well known to healthcare services, but are at equally high risk due to frailty.
I do not have any experience of using tool in clinical practice, but Dr. Wilkinson Hart has been considering frailty at Wiltshire Community Team for People with Learning Disabilities for a number years to help guide individual’s care and service provision.
The term “frailty”, and how it relates to and is assessed in adults with a learning disability has become an important consideration for specialist learning disability services during the pandemic. Having an objective measure to support the individualised assessment of frailty would be very helpful. The Frailty Index has potential, but may need to be streamlined to make it feasible to complete in clinical practice during the COVID-19 pandemic. The tool is very useful in raising the awareness of the factors evidenced to contribute to frailty in older adults with a learning disability.
In other news;
Chris Hatton, Professor of Public Health and Disability at Lancashire University, continues to write regular blogs exploring different aspects of how COVID-19 impacts people with a learning disability. He has released three blogs over the past few weeks that are particularly relevant to specialist learning disability physiotherapists:
- Potential risk factors for the impact of COVID-19 on health: People with learning disabilities
- Health condition does not equal Vulnerability does not equal Need for Support
- Recording and analysing COVID-19 related deaths amongst people getting social care and disabled people – what should be possible in England?
The blogs are available at (https://chrishatton.blogspot.com/) and are well worth reading.
NHS England and Improvement released a ‘Clinical guide for frontline staff to support the management of patients with a learning disability, autism or both during the coronavirus pandemic.’
The guidance outlines key points that frontline clinicians should consider and address when assessing and treating patients with a learning disability or with autism who are suspected of having or are known to have coronavirus. These include:
- Be aware of diagnostic overshadowing
- Pay attention to healthcare passports
- Listen to parents/carers
- Make reasonable adjustments
- Understanding behavioural responses to illness/pain/discomfort
- Mental Capacity Act
- Ask for specialist support and advice if necessary
- Mental wellbeing and emotional distress
The advice is consistent with the messages from the wide range of publications outlining the barriers people with a learning disability experience when they access mainstream services; and the approaches to overcome them. It is positive that the advice is being reiterated by NHS England and Improvement during the COVID-19 pandemic. It is also positive that they acknowledge the role of the local community learning disability team in supporting acute hospitals (https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0031_Specialty-guide_LD-and-coronavirus-v1_-24-March.pdf).
NHS England and Improvement released visitor guidance for hospital admissions during the COVID-19 pandemic on the 8th April 2020. They report that visiting is suspended with immediate effect and until further notice. However, recognise that there are exceptional circumstances where one visitor – an immediate family member or carer – will be permitted to visit. This includes:
- supporting someone with a mental health issue such as dementia, a learning disability or autism, where not being present would cause the patient to be distressed.
They advise families and carers to contact the ward or department in advance to discuss appropriate arrangements. For further details see https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0030_Visitor-Guidance_8-April-2020.pdf
Please continue to share how you and your services are managing the COVID-19 pandemic. As themes evolve from the feedback I can explore them further and share via news articles. I will also continue to keep abreast of the messages and publications coming from the government and share them as appropriate.
David Standley, Research and CPD Officer, email@example.com
Schoufour et al, 2013. Development of a frailty index for older people with intellectual disabilities: results from the HA-ID study. Research in developmental disabilities, 34(5), 1541-1555.
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