Individual research recommendation details

Recommendation ID

NG42/3

Question

Prognostic tools:- Is the amyotrophic lateral sclerosis (ALS) Prognostic Index an accurate predictor of survival in people with MND under NHS care in England and/or Wales?

Any explanatory notes
(if applicable)

Why this is important:- Accurate predictions of survival in people with MND would be of great use to clinicians and to the person with MND, their family and carers. Accurate predictions would enable people with MND to be clearer about their prognosis, make plans for the rest of their life and have a well-prepared and dignified transition into the end of life phase. Family members would similarly benefit in being more aware of the likely progression and prepare themselves for the death of their loved one.
Accurate predictions of survival would enable professionals to create and deliver more effective management and care plans and access services when it is most appropriate, for example specialist palliative care.
The ALS Prognostic Index (ALS-PI) was developed in a cohort of people with ALS in the Republic of Ireland and externally validated in a cohort in Italy. However, it has not been validated in people with ALS, primary lateral sclerosis or progressive muscular atrophy in the NHS in England or Wales.
The tool needs to be validated in a UK population using a simplified measure of executive function.

Source guidance details

Comes from guidance

Motor neurone disease: assessment and management

Number

NG42

Date issued

February 2016

Other details