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The Transthyretin Amyloidosis - Quality of Life (ATTR-QOL) Questionnaire: Development of a Conceptual Model and Disease-Specific Patient-Reported Outcome Measure.

Meaghan O'ConnorKristen HsuLynne E BroderickKristen L McCauslandKaitlin LaGasseSabrina RebelloMichelle K WhiteIsabelle Lousada
Published in: Patient related outcome measures (2023)
The ATTR-QOL was created with significant patient involvement and guidance from a multidisciplinary group of experts. The mix of patient and clinical perspectives helped to ensure a balanced representation of all relevant disease experiences and clinical specialties. With further refinement from psychometric testing, the ATTR-QOL will provide a standard, comprehensive measure for all ATTR-specific research including both clinical trials and clinical practice.
Keyphrases
  • patient reported outcomes
  • clinical trial
  • clinical practice
  • case report
  • mental health
  • randomized controlled trial
  • quality improvement
  • phase ii
  • open label
  • double blind