An international study found that EQ-5D-5L scores worsened over time in ALS
Original source
The EQ-5D-5L in amyotrophic lateral sclerosis: an international longitudinal exploration as part of ALS-CarE. (opens in a new tab)Compass summarised this from the study's abstract.
Study details
- Studied in
- Human
Population inferred from the title and abstract by Compass.
A study of 296 people with amyotrophic lateral sclerosis (ALS) at six European centres found that EQ-5D-5L health-state scores generally worsened over about 19 months. Changes varied substantially depending on which country’s valuation tariff was used. Pain or discomfort and anxiety or depression were the only domains showing notable improvement at later follow-up.
Why this matters
The findings matter for researchers and clinicians using EQ-5D-5L to track quality of life or assess ALS services and treatments. In multinational studies, different national tariffs could make the same change appear larger or smaller. This study evaluates measurement, not a treatment, so it does not change care for people with ALS.
Limitations and context
This was a longitudinal analysis of 296 patients from six European ALS centres in five countries, with follow-up of about 18.6 months. It examined questionnaire performance and associations with disease stage, rather than testing a treatment or intervention. The results may not represent people outside these centres or countries.