Terminology for clinical frailty information to support exchange digital health data in Australia

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Prerequisites

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The feature

Terminology (value set(s) and code system) is needed to support the exchange of clinical frailty information between healthcare providers, and between healthcare providers and the My Health Record system.

The values are to cover the concepts in the Canadian Study of Health & Aging, Clinical Frailty Scale and ideally would be drawn from SNOMED-CT as the preferred national solution for clinical terminology. However, it is possible in lieu of SNOMED-CT that a specific code system be created for this purpose.

The value set(s) will be referenced directly in FHIR and CDA specifications that support the exchange of patient summary information in forthcoming aged care specifications, and is intended to be considered for inclusion in other continuity of care specifications such as Discharge Summary, Referral or care planning.

The usage scenario is the electronic exchange of current, valid, frailty screening information documented as part of an assessment by a healthcare provider.

Concept definitions

The Victorian Department of Health¹ defines frailty as

a multidimensional geriatric syndrome characterised by a decline of physical and cognitive reserves that leads to increased vulnerability. Frailty increases with age and is associated with falls, longer stays in hospital, difficulty recovering from illness and surgery, and mortality.

and that

It is important to recognise frailty in older people in hospital so that we can develop and implement individualised care plans, reduce the risk of onset or deterioration and provide people with the opportunity to retain their independence and social connections on discharge.

A number of frailty assessment scales are available and used internationally and in Australia². Clinical Excellence Queensland³ has endorsed the use of the Canadian Study of Health & Aging, Clinical Frailty Scale⁴⁵, as the agreed standard frailty screening tool across Queensland.

Clinical Frailty Scale scores (taken from the 2020 update⁵):

Concept	Meaning
1 Very fit	People who are robust, active, energetic and motivated. They tend to exercise regularly and are among the fittest for their age.
2 Fit	People who have no active disease symptoms but are less fit than category 1. Often, they exercise or are very active occasionally, e.g. seasonally.
3 Managing well	People whose medical problems are well controlled, even if occasionally symptomatic, but often are regularly active beyond routine walking.
4 Living with very mild frailty	Previously "Vulnerable", this category marks early transition from complete independence. While not dependent on others for daily help, often symptoms limit activities. A common complaint is being "slowed up", and/or being tired during the day.
5 Living with mild frailty	People who often have more evident slowing, and need help in high order instrumental activities of daily living (finances, transportation, heavy housework). Typically, mild frailty progressively impairs shopping and walking outside alone, meal preparation, medications and begins to restrict light housework.
6 Living with moderate frailty	People need help with all outside activities and with keeping house. Inside, they often have problems with stairs and need help with bathing and might need minimal assistance (cuing, standby) with dressing.
7 Living with severe frailty	Completely dependent for personal care, from whatever cause (physical or cognitive). Even so, they seem stable and not at high risk of dying (within ~6 months).
8 Living with very severe frailty	Completely dependent for personal care and approaching end of life. Typically, they could not recover even from a minor illness.
9 Terminally ill	Approaching the end of life. This category applies to people with a life expectancy <6 months, who are not otherwise living with severe frailty. (Many terminally ill people can still exercise until very close to death.)

What it actually enables people to do

Provide a publicly accessible FHIR representation of the internationally agreed set of values in a governed manner that is reusable in an Australian context.

How awesome would it be?

Awesome - an agreed, standardised and unambiguous means of exchanging clinical frailty assessment data.

This data coming in from residential aged care facilities (e.g. as part of an aged care transfer summary) can help treating practitioners quickly identify those patients in need of greater care.

Additional context

1. Clinical frailty information is not currently implemented in the MHR system or explicitly supported in existing Agency specifications, the closest material in nature is that of Problem/Diagnosis (i.e. Condition) but no grading, staging, or assessment elements are supported.
2. The Geriatric Medicine Research, Dalhousie University's permission for use⁴ is

To guard against copyright infringement or unlicensed commercial use, we ask all potential users to complete a Permission for Use Agreement. Agreements are reviewed by the Industry Liaison Office at Dalhousie University to determine whether a license agreement is required. Requests for non-commercial educational, clinical and research use, as well as for reprint usually do not require a license agreement.

Footnotes

1. Victorian Department of Health (10 November 2021) Older people in hospital, Frailty. ↩

2. RACGP aged care clinical guide (Silver Book) 5th Edition (October 2019). Part A Frailty. ↩

3. Clinical Excellence Queensland | Queensland Health (17 March 2020) Improving the quality, safety and care of older Queenslanders, Identification of frailty. ↩

4. Geriatric Medicine Research, Dalhousie University. Clinical Frailty Scale. ↩ ↩²

5. Rockwood, K. and Theou O.. (2020). "Using the Clinical Frailty Scale in Allocating Scarce Health Care Resources", Canadian Geriatrics Journal, 23(3):254-256. https://doi.org/10.5770/cgj.23.463 ↩ ↩²