Journal article
End-of-life measures in Huntington disease: HDQLIFE Meaning and Purpose, Concern with Death and Dying, and End of Life Planning
Journal of neurology, Vol.266(10), pp.2406-2422
10/2019
DOI: 10.1007/s00415-019-09417-7
PMCID: PMC6766417
PMID: 31190171
Abstract
Huntington disease (HD) is a progressive neurodegenerative disorder. There are no HD-specific measures to assess for end-of-life (EOL) preferences that have been validated for clinical use. The purpose of this study is to demonstrate reliability and validity of three HD-specific EOL measures for use in and clinical research settings.
We examined internal reliability, test-retest reliability, floor and ceiling effects, convergent and discriminant validity, known groups' validity, measurement error, and change over time to systematically examine reliability and validity of the HDQLIFE EOL measures.
Internal consistency and test-retest reliability were > 0.70. The measures were generally free of floor and ceiling effects and measurement error was minimal. Convergent and discriminant validity were consistent with well-known constructs in the field. Hypotheses for known groups validity were partially supported (there were generally group differences for the EOL planning measures, but not for meaning and purpose or concern with death and dying). Measurement error was acceptable and there were minimal changes over time across the EOL measures.
Results support the clinical utility of the HDQLIFE EOL measures in persons with HD.
Details
- Title: Subtitle
- End-of-life measures in Huntington disease: HDQLIFE Meaning and Purpose, Concern with Death and Dying, and End of Life Planning
- Creators
- Noelle E Carlozzi - Department of Physical Medicine and Rehabilitation, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G216, Ann Arbor, MI, 8109-2800, USA. carlozzi@med.umich.eduNicholas R Boileau - Department of Physical Medicine and Rehabilitation, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G216, Ann Arbor, MI, 8109-2800, USAJane S Paulsen - Department of Psychological and Brain Sciences, The University of Iowa, Iowa City, IA, USAJoel S Perlmutter - Neurology, Radiology, Neuroscience, Physical Therapy, Occupational Therapy, Washington University in St. Louis, St. Louis, MO, USAJin-Shei Lai - Department of Medical Social Sciences, Northwestern University, Chicago, IL, USAElizabeth A Hahn - Department of Medical Social Sciences, Northwestern University, Chicago, IL, USAMichael K McCormack - Department of Psychiatry, Rutgers University, RWJMS, Piscataway, NJ, USAMartha A Nance - Hennepin County Medical Center, Minneapolis, MN, USADavid Cella - Northwestern University, Evanston, IL, USAStacey K Barton - Neurology, Radiology, Neuroscience, Physical Therapy, Occupational Therapy, Washington University in St. Louis, St. Louis, MO, USANancy R Downing - College of Nursing, Texas A&M University, Bryan, TX, USA
- Resource Type
- Journal article
- Publication Details
- Journal of neurology, Vol.266(10), pp.2406-2422
- DOI
- 10.1007/s00415-019-09417-7
- PMID
- 31190171
- PMCID
- PMC6766417
- NLM abbreviation
- J Neurol
- ISSN
- 0340-5354
- eISSN
- 1432-1459
- Grant note
- R01 NS040068 / NINDS NIH HHS R01NS077946 / NINDS NIH HHS UL1TR000433 / NINDS NIH HHS R01NS040068 / NINDS NIH HHS R01 NS077946 / NINDS NIH HHS UL1 TR002240 / NCATS NIH HHS UL1 TR000433 / NCATS NIH HHS
- Language
- English
- Date published
- 10/2019
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984083219502771
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