Advance care planning uptake in ALS has risen over a decade but remains held back by cognitive impairment

An Italian registry study of 1,219 people with amyotrophic lateral sclerosis (ALS) examined advance care planning (ACP) discussions over a decade Primary Study. Overall, 54% had documented ACP discussions, rising to 62% over the ten-year period studied. ACP was positively associated with subsequent palliative care activation and with death occurring at home, but cognitive impairment was independently associated with reduced ACP uptake.

Population-based registry data of this kind gives strong generalisability within the population studied, and this is among the larger published ALS-specific ACP datasets internationally, even though it is drawn from a single national registry.

This is directly relevant to any motor neurone disease or neurodegenerative caseload. The cognitive-impairment barrier to ACP uptake is a specific equity consideration wherever neurodegenerative disease caseloads overlap with populations where dementia or cognitive impairment is also prevalent.