Investigating health-related quality of life in rare diseases: a case study in utility value determination for patients with CLN2 disease (neuronal ceroid lipofuscinosis type 2)

BACKGROUND: Utility studies enable preference-based quantification of a disease’s impact on patients’ health-related quality of life (HRQoL). It is often difficult to obtain utility values for rare, neurodegenerative conditions due to cognitive burden of direct elicitation methods, and the limited s...

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Detalhes bibliográficos
Publicado no:Orphanet J Rare Dis
Main Authors: Gissen, Paul, Specchio, Nicola, Olaye, Andrew, Jain, Mohit, Butt, Thomas, Ghosh, Wrik, Ruban-Fell, Benjamin, Griffiths, Annabel, Camp, Charlotte, Sisic, Zlatko, Schwering, Christoph, Wibbeler, Eva, Trivisano, Marina, Lee, Laura, Nickel, Miriam, Mortensen, Amanda, Schulz, Angela
Formato: Artigo
Idioma:Inglês
Publicado em: BioMed Central 2021
Assuntos:
Research
Acesso em linha:https://ncbi.nlm.nih.gov/pmc/articles/PMC8117322/
https://ncbi.nlm.nih.gov/pubmed/33980287
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1186/s13023-021-01829-x
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