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- W3113006081 abstract "Quality of life (QoL) of patients with phenylketonuria (PKU) is impacted by both symptoms and requisite dietary restrictions. Our objective was to estimate the impact of PKU symptoms and dietary restrictions on QoL to better understand the value of treatments and their potential to reduce disease burden. A web-based survey of adults in the Swedish general population, PKU patients and their carers was performed using Time Trade Off (TTO) and Discrete Choice Experiment (DCE) methods to elicit health utility and preference information regarding PKU health states. Vignettes were developed with clinical experts for different PKU health states considering symptom severity (cognitive, emotional, and physical) and/or dietary restrictions Data was collected using TTO questionnaires for diet (n=500) and for symptoms (n=500), and one DCE questionnaire (n=1,117). The total disutilities associated with emotional, cognitive and physical symptoms at mild, moderate, or severe severity levels respectively, was 0.064, 0.154, 0.487 in the TTO and 0.122, 0.437, 1.522 in the DCE. Cognitive symptoms provided the most disutility for mild disease as did physical symptoms for severe disease. The disutility of a partly restricted diet without medical food (MF), a partly restricted diet with MF, and a restricted diet with MF, respectively, was 0.061, 0.119, 0.177 in the TTO and 0.043, 0.031, 0.108 in the DCE. Data was collected using the general population, PKU patients and carers which also highlighted the disability paradox in mild disease. The differences between TTO and DCE estimates are consistent with previous studies. Both methods showed that disease severity and diet restrictions, as highlighted by the preferences of the general public have significant impact on QoL." @default.
- W3113006081 created "2020-12-21" @default.
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- W3113006081 date "2020-12-01" @default.
- W3113006081 modified "2023-09-26" @default.
- W3113006081 title "PRO128 The Impact on Quality of Life of Diet Restrictions and Disease Symptoms Associated with Adult Phenylketonuria (PKU) in Sweden" @default.
- W3113006081 doi "https://doi.org/10.1016/j.jval.2020.08.1864" @default.
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