Impact case study database

Impact on guidelines

In 2016, NICE updated its guidelines for assessment and management of MND [5.1a]. Abrahams was a co-opted expert advisor on the Guideline Development Group (GDG), and the only psychologist on the group [5.1b]. The Chair of the GDG described the reasons for asking her to join the GDG: “ *Professor Abrahams‘ […] research at Edinburgh was most pertinent to the GDG’s discussion on this topic.*” [5.1c].

As a result of the consensus reached by the GDG, the published NICE guidelines recommended, for the first time, that all individuals with MND should be offered a cognitive assessment at diagnosis by a member of the multidisciplinary care team and that all subsequent care should be tailored to their identified cognitive impairments [5.1a]. The Chair stated: “ The knowledge that a standardised tool existed to explore these changes gave the GDG additional confidence that this recommendation could be executed in practice.” [5.1c].

The UK’s largest MND charity, MND Association (MNDA), an important source of information for people with MND, carers and families and clinicians, also recommends cognitive assessments for all patients with MND using the ECAS. They publish comprehensive information booklets for 3 audiences: patients and carers (2015, updated in 2020) [5.2a], healthcare professionals in secondary care (2014) [5.2b] and GP primary care teams (2015) [5.2c]. All specifically recommend the ECAS for diagnosing cognitive and behavioural changes, and the healthcare professionals’ booklet includes a detailed 2-page description of the ECAS and its use, citing 11 Edinburgh publications. Since MNDA began collecting data in January 2017, the patient and carer guide has been downloaded 3,250 times (2,028 hard copy orders), the secondary care guide 3,369 times (1,837 orders) and the primary care guide 3,449 times (3,960 orders) [August 2020 data; 5.2d]. The Royal College of Nursing also includes a page on cognitive changes in their list of resources for nurses and other healthcare professionals (published in 2016) and explicitly recommends using the ECAS to screen for signs of cognitive or behavioural change in patients with MND [5.3].

Impact on professional training

In 2016, MNDA commissioned the Edinburgh Neuroscience team to develop a national training programme to enable cognitive screening of all patients with MND in the UK, in accordance with the NICE guidelines. This led to the development of a day-long Masterclass on how to administer the ECAS and interpret its results. The masterclass was delivered to 353 MND healthcare professionals in England, Wales and Northern Ireland [5.4] and a further 16 in Scotland, reaching all 22 MNDA-recognised care centres/networks in England, Wales, and Northern Ireland and 11 MND clinics in Scotland. 85 of the participants were clinical nurse specialists who provide front-line NHS clinical support throughout the disease and help coordinate care; the rest were occupational therapists (39%), speech and language therapists (18%), physiotherapists (5%), psychologists (5%) and dieticians (2%). Importantly, this programme not only trained and certified key MND healthcare professionals to administer the ECAS, but also actively facilitated links with their local clinical neuropsychology services [5.4].

Impact on clinical practice

Accounting for MND patients’ cognitive needs is now the standard of care in the UK. In Scotland, this is managed through a “dual care pathway” whereby every newly diagnosed patient with MND is assessed using the ECAS either by their local NHS neuropsychology services, or a member of the MND multidisciplinary care team supervised by their local neuropsychologist [5.5a]. The British Psychological Society cites this as an exemplary system of managing MND patients’ cognitive needs [5.5b].

In a 2018 survey of all 22 MND care centres in the UK, 21 centres (95%) reported screening patients for cognitive and behavioural changes using the ECAS. 10 centres (45%) reported offering the ECAS to every new patient with MND [5.6].

Impact on health & welfare

Use of the ECAS facilitates personalised care and leads to improved quality of life for patients with MND through enabling the multidisciplinary care team to tailor interventions and support to the particular needs of each patient and their carers. This was illustrated by a qualitative study consisting of semi-structured interviews with 20 consultant neurologists, clinical neuropsychologists, patients and carers across the UK [5.6]. This study indicated that use of the ECAS 1) raises awareness about cognitive/behavioural changes among patients, carers and healthcare professionals, 2) validates and reassures the patients’ and carers’ experience by providing an objective measure of any changes 3) aids understanding of the patients’ presentation by identifying changes that may be underestimated by the healthcare team and 4) ultimately informs clinical decision-making. The latter includes decisions over suitability and type of interventions, prompting early discussions of end-of-life care, improving care by informing other healthcare professionals to adjust support to the needs of the patient, and identifying carers’ support needs [5.6]. A consultant neurologist interviewed for the study gave an example:

“You’re […] being more proactive in terms of getting patients’ opinions of what they want done if there’s evidence of cognitive impairment…if people are likely to have significant behavioural disturbance and are not going to be able to […] understand what a gastrostomy is or take part in it.” [5.6]

International uptake of the ECAS

The ECAS has been implemented into routine clinical practice across Europe, driven by the European Network for the Cure of ALS (ENCALS), an EU–funded group of 64 leading MND centres in 19 countries. ENCALS’s adoption the ECAS as the recommended assessment tool in July 2013 led to its widespread subsequent implementation in ENCALS-affiliated centres; the Chair and Deputy Chair confirmed in 2020: “ ECAS is now recognized as the gold standard of cognitive assessment in ALS, as it is more sensitive and specific than any other available screening tool for ALS. The information it provides is used to support patients, determine and adapt treatments and provide specialised care for people with ALS according to their cognitive difficulties.” [5.7]

This widespread implementation of the ECAS in ENCALS centres has been enabled by the availability of the ECAS in 22 different languages. These are freely available on a dedicated ECAS website [5.8a], which was launched in January 2018 and has received more than 41,500 visits from 124 countries between then and December 2020 [5.8b].

International uptake of the ECAS has been further facilitated by an online, ENCALS-certified, training programme aimed at healthcare professionals wishing to start using the ECAS in their practice. By July 2020, this had certified 230 healthcare professionals from 16 countries across Europe, Australia, USA and Canada to use the ECAS in clinical settings [5.8b].

In 2019, an international survey of MND centres around the world asked about the proportion of new and existing ALS patients that undergo a cognitive assessment, what the results are used for, and how they inform patient care. 80 responses were received from the major MND clinical centres in 25 countries outside the UK (including ENCALS centres). 45 (56%) centres reported using the ECAS in routine clinical practice. Combined, these 45 centres treat 7,434 patients per year and receive 3,218 new patients per year. Importantly, 43 (96%) of these centres reported that ECAS results directly inform their clinical practice, and 72% agreed or strongly agreed that MND patients screened for cognitive changes receive better clinical care [5.9].

The ECAS is the standard outcome measure in international clinical trials for MND

The ECAS is one of the core recommended tools in the US National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements guidelines for clinical trials [5.10a] and has thus far been used in 8 drug trials for MND [5.10b].The largest of these, an ongoing Phase III clinical trial of arimoclomol, has so far randomised 245 ALS patients across 11 countries, involving 9 translations of the ECAS and training 72 ECAS interviewers. The ECAS is also an outcome measure in the innovative Edinburgh-led UK-wide multi-arm adaptive trial MND-SMART [5.10b].

In Europe, the ECAS is the agreed outcome measure for cognitive/behavioural changes in the protocol for TRICALS [5.10c], the largest European research initiative for find a cure for ALS, involving 42 research centres in 16 countries. TRICALS is currently running an additional 5 clinical trials to identify effective treatments for MND [5.10d].