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)

PURPOSE: Huntington disease (HD) is an incurable terminal disease. Thus, end of life (EOL) concerns are common in these individuals. A quantitative measure of EOL concerns in HD would enable a better understanding of how these concerns impact health-related quality of life. Therefore, we developed n...

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Vydáno v:Qual Life Res
Hlavní autoři: Carlozzi, N.E., Downing, N.R., McCormack, M.K., Schilling, S.G., Perlmutter, J.S., Hahn, E. A., Lai, J.-S., Frank, S., Quaid, K.A., Paulsen, J. S., Cella, D., Goodnight, S.M., Miner, J.A., Nance, M.A.
Médium: Artigo
Jazyk:Inglês
Vydáno: 2016
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Article
On-line přístup:https://ncbi.nlm.nih.gov/pmc/articles/PMC5011453/
https://ncbi.nlm.nih.gov/pubmed/27393121
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1007/s11136-016-1354-y
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