Patient related outcome measures
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Patient Relat Outcome Meas · Jan 2021
Retracted PublicationIncidence and Risk Factors of Emergence Delirium after Anesthesia in Elderly Patients at a Postanesthesia Care Unit in Ethiopia: Prospective Observational Study.
For legal reasons, the publisher has withdrawn this article from public view. For additional information, please contact the publisher.
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Patient Relat Outcome Meas · Jan 2021
Deriving Vignettes for the Rare Disease AADC Deficiency Using Parent, Caregiver and Clinician Interviews to Evaluate the Impact on Health-Related Quality of Life.
Aromatic l-amino acid decarboxylase (AADC) deficiency is a rare genetic condition, characterised by movement disorder, and speech and cognitive functioning impairment. To enable economic evaluation of treatments, health-related quality of life or utilities need to be derived. These are currently lacking in the literature. This is challenging, where patient numbers are small, particularly in paediatric populations. This study outlines the 5-stage development of vignettes describing AADC, for use in a subsequent health-state utility elicitation study, with an emphasis on caregiver and clinician engagement. ⋯ The differing focus of caregivers, clinicians and the literature reinforces the importance of patient/caregiver engagement. The vignettes need to comprehensively capture what it is like to live with AADC deficiency, in order for the subsequent utilities to be robust. A focus on evidence triangulation, especially for idiopathic conditions, and how engagement is sought from caregivers are important future avenues of research.