End-of-life measures in Huntington disease: HDQLIFE Meaning and Purpose, Concern with Death and Dying, and End of Life Planning-Reference-Cited by-同舟云学术

End-of-life measures in Huntington disease: HDQLIFE Meaning and Purpose, Concern with Death and Dying, and End of Life Planning

Published:2019-06-12 Issue:10 Volume:266 Page:2406-2422
ISSN:0340-5354
Container-title:Journal of Neurology
language:en
Short-container-title:J Neurol

Author:

Carlozzi Noelle E.,Boileau Nicholas R.,Paulsen Jane S.,Perlmutter Joel S.,Lai Jin-Shei,Hahn Elizabeth A.,McCormack Michael K.,Nance Martha A.,Cella David,Barton Stacey K.,Downing Nancy R.

Funder

National Institute of Neurological Disorders and Stroke

Publisher

Springer Science and Business Media LLC

Subject

Neurology (clinical),Neurology

Link

http://link.springer.com/content/pdf/10.1007/s00415-019-09417-7.pdf

Reference55 articles.

1. The Huntington's Disease Collaborative Research Group (1993) A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington's disease chromosomes. Cell 72:971–983

2. Ross CA, Margolis RL, Rosenblatt A, Ranen NG, Becher MW, Aylward E (1997) Huntington disease and the related disorder, dentatorubral-pallidoluysian atrophy (DRPLA). Medicine (Baltimore) 76(5):305–338

3. Paulsen JS (2010) Early detection of Huntington disease. Future Neurol. https://doi.org/10.2217/fnl.09.78

4. Carlozzi NE, Tulsky DS (2013) Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease. J Health Psychol 18(2):212–225

5. Carlozzi NE, Downing NR, McCormack MK et al (2016) 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). Qual Life Res 25:2403–2415

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