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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 Nance
Published 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.
Keyphrases
  • psychometric properties
  • patient reported outcomes
  • palliative care
  • advanced cancer
  • healthcare
  • decision making
  • human health