New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system).
Noelle E CarlozziN R DowningM K McCormackS G SchillingJ S PerlmutterE A HahnJ S LaiS FrankK A QuaidJ S PaulsenD CellaS M GoodnightJ A MinerM A NancePublished in: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation (2016)
The HDQLIFE Concern with Death and Dying CAT and corresponding 6-item short form, and the 4-item calibrated HDQLIFE Meaning and Purpose scale demonstrate excellent psychometric properties. These new measures have the potential to provide clinically meaningful information about end-of-life preferences and concerns to clinicians and researchers working with individuals with HD. In addition, these measures may also be relevant and useful for other terminal conditions.