Societal perspectives on disease and treatment attributes characterizing rare diseases: a qualitative study from the United States.
Shelagh M SzaboIvana F AudhyaDavid FeenyPeter NeumannDaniel C MaloneKatherine L GoochPublished in: Journal of patient-reported outcomes (2022)
Attributes including disease severity, impact on life expectancy and HRQoL, and treatment availability were all highly important to members of the general public. These findings support the growing evidence regarding the importance of expanding value assessments to include attributes considered important from a societal perspective.