Noelle E Carlozzi1, Nicholas R Boileau2, Jane S Paulsen3,4,5, Joel S Perlmutter6, Jin-Shei Lai7, Elizabeth A Hahn7, Michael K McCormack8,9, Martha A Nance10,11, David Cella7,12,13, Stacey K Barton6, Nancy R Downing14. 1. 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.edu. 2. 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. 3. Department of Psychiatry, Carver College of Medicine, The University of Iowa, Iowa City, IA, USA. 4. Department of Neurology, Carver College of Medicine, The University of Iowa, Iowa City, IA, USA. 5. Department of Psychological and Brain Sciences, The University of Iowa, Iowa City, IA, USA. 6. Neurology, Radiology, Neuroscience, Physical Therapy, Occupational Therapy, Washington University in St. Louis, St. Louis, MO, USA. 7. Department of Medical Social Sciences, Northwestern University, Chicago, IL, USA. 8. Department of Pathology, Rowan University-SOM, Stratford, NJ, USA. 9. Department of Psychiatry, Rutgers University, RWJMS, Piscataway, NJ, USA. 10. Struthers Parkinson's Center, Golden Valley, MN, USA. 11. Hennepin County Medical Center, Minneapolis, MN, USA. 12. Department of Preventive Medicine, Northwestern University, Chicago, IL, USA. 13. Northwestern University, Evanston, IL, USA. 14. College of Nursing, Texas A&M University, Bryan, TX, USA.
Abstract
BACKGROUND AND PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Results support the clinical utility of the HDQLIFE EOL measures in persons with HD.
BACKGROUND AND PURPOSE: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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Results support the clinical utility of the HDQLIFE EOL measures in persons with HD.
Entities:
Keywords:
End of life; HDQLIFE; Huntingon disease; Reliability; Validity
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