Qualitative development of the PROMIS Profile v1.0-Familial Chylomicronemia Syndrome (FCS) 28.
Karen KaiserRina S FoxChelsea PerschonMontserrat Vera-LlonchJordi AlonsoLaia CubellsDavid CellaPublished in: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation (2022)
The PROMIS Profile v1.0-familial chylomicronemia syndrome (FCS) 28 provides strong content validity for assessing quality of life among patients with FCS. The benefits of PROMIS, including norm-referenced mean values for each measure, will facilitate comparison of patients with FCS to other clinical populations.