National audit of cognitive assessment in people with pwMND A national audit of cognitive assessment in people with motor neurone disease (pwMND) in Scotland

Figures & data

Table 1 Audit standards.

Standard 1. Following diagnosis of MND, cognitive screening is recommended in all patients.

The NICE recommendations are (4):

At diagnosis, and if there is concern about cognition and behavior, explore any cognitive or behavioral changes with the person and their family members and/or carers as appropriate. If needed, refer the person for a formal assessment in line with the NICE guideline on dementia. [new 2016]

The multidisciplinary team (MDT) should assess, manage and review the following areas, including the person's response to treatment: … cognition and behaviour

Tailor all discussions to the person’s needs, considering their communication ability, cognitive status and mental capacity

Standard 2. Care planning should be adapted for people with cognitive impairment and behavior change.

The NICE recommendations are:

Planning of end of life care

Be sensitive about the timing of discussions and consider the person's current communication ability, cognitive status and mental capacity

Think about discussing advance care planning with people at an earlier opportunity if you expect their communication ability, cognitive status, or mental capacity to get worse. Cognitive impairment and the number of reported behavioral features are significantly related to advancing disease stage and are more likely to occur to those with cognitive changes at onset (5,6).

2.Use of gastrostomy

Before a decision is made on the use of gastrostomy for a person with MND who has frontotemporal dementia, the neurologist from the MDT should assess the following:

The person's ability to make decisions and to give consent

The severity of frontotemporal dementia and cognitive problems

Whether the person is likely to accept and cope with treatment

3.Non-invasive ventilation

Before a decision is made on the use of non-invasive ventilation for a person with a diagnosis of frontotemporal dementia, the MDT together with the respiratory ventilation service should carry out an assessment that includes: the person's capacity to make decisions and to give consent, the severity of dementia and cognitive problems

(5) Crockford et al. Neurology 2018; (6) Elamin et al., Neurology 2013.

Table 2 Patient demographics.

	Audit phase 1	Audit phase 2
Median age of onset	67 (Median Abs deviation = 8)	66 (Median Abs deviation = 8.5)
% males, % females	63%, 37%	61%, 39%
Median disease duration (in months)	27 (median Abs deviation = 13)	25 (Median Abs deviation = 13)

Figure 1 (a) Implementation of cognitive assessments Phase 1 & 2. In the UK, the cutoff for the ECAS total is 105. A score AT or BELOW 105 suggests that a person may have cognitive impairment. “Pending” were the cases where ECAS was undertaken but the data were not yet interpreted or inputted to the CARE-MND platform. (b) Interventions by cognitive status.

Crockford C, Newton J, Lonergan K, Chiwera T, Booth T, et al. ALS-specific cognitive and behavior changes associated with advancing disease stage in ALS. Neurology 2018;91(15)

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Elamin M, Bede P, Byrne S, Jordan L, Gallagher L, et al. Cognitive changes predict functional decline in ALS: a population-based longitudinal study. Neurology 2013;80(17):1590–7

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Data sharing statement

Requested for access to data should be addressed to the corresponding author and the CARE-MND Consortium.