The economic impact of amyotrophic lateral sclerosis: a systematic review

Abstract

Amyotrophic lateral sclerosis (ALS) is a devastating neurological disease for which there is no cure, and the associated economic burden is considerable. In this review, the authors summarize the existing body of literature pertaining to the costs associated with ALS to demonstrate the scale and scope of the economic burden of this paralyzing disease. Twelve studies from eight countries published between January 2001 and January 2015 met the inclusion criteria and were included in this review. Direct and indirect costs varied significantly across countries. Standardized to the 2015 US$, the annual total cost per patient ranged from US$ 13,667 in Denmark to as high as US$ 69,475 in the USA, with the national economic burden of ALS estimated at US$ 279–472 million in the USA. Costs associated with ALS were greater than that of other neurological diseases, indicating a continued need for medical advances and financial support for patients and families. Regional cost analyses are necessary to determine how best to spend funds that have been raised globally from the ice bucket phenomenon.

Keywords:

• ALS
• Amyotrophic lateral sclerosis
• burden of illness
• costs
• economics
• healthcare
• ice bucket
• motor neuron disease
• review

Financial & competing interests disclosure

L Zinman receives research support from the Canadian Institute of Health Research, National Institute of Health, and ALS Canada. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Key issues

• Amyotrophic lateral sclerosis (ALS) is a progressive neurologic disorder with a median survival of 2 to 4 years from symptom onset.

• ALS is associated with a significant economic burden as it results in progressive impairment in activities of daily living, including walking, eating and speaking.

• The direct and indirect costs associated with ALS are both substantial.

• ALS has a significant economic impact on patients, families and societies across the world, with the greatest total cost per patient being measured in the USA.

• Total cost per ALS patient is greater than other neurologic diseases, including dementia, Parkinson’s disease and stroke.

• Major contributors to direct healthcare costs include medications, hospitalization, outpatient care, medical aids and equipment.

• Direct non-healthcare costs can be quite substantial, with the most important cost being home modifications.

• Indirect costs are substantial and driven by income loss of patients and voluntary informal caregivers (usually, family members)

• Future research should focus on out-of-pocket expenses – which will vary between healthcare systems – to meaningfully determine cost-driving factors to individuals and inform where financial aid would be best directed.