Journal article
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)
Quality of life research, Vol.25(10), pp.2403-2415
10/2016
DOI: 10.1007/s11136-016-1354-y
PMCID: PMC5011453
PMID: 27393121
Abstract
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 new measures of EOL for use in HD.
An EOL item pool of 45 items was field tested in 507 individuals with prodromal or manifest HD. Exploratory and confirmatory factor analyses (EFA and CFA, respectively) were conducted to establish unidimensional item pools. Item response theory (IRT) and differential item functioning analyses were applied to the identified unidimensional item pools to select the final items.
EFA and CFA supported two separate unidimensional sets of items: Concern with Death and Dying (16 items), and Meaning and Purpose (14 items). IRT and DIF supported the retention of 12 Concern with Death and Dying items and 4 Meaning and Purpose items. IRT data supported the development of both a computer adaptive test (CAT) and a 6-item, static short form for Concern with Death and Dying.
The HDQLIFE Concern with Death and Dying CAT and corresponding 6-item short form, and the 4-item calibrated HDQLIFE Meaning and Purpose scale demonstrate excellent psychometric properties. These new measures have the potential to provide clinically meaningful information about end-of-life preferences and concerns to clinicians and researchers working with individuals with HD. In addition, these measures may also be relevant and useful for other terminal conditions.
Details
- Title: Subtitle
- 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)
- Creators
- N E Carlozzi - University of MichiganN R Downing - College of Nursing, The University of Iowa, Iowa City, IA, USAM K McCormack - Department of Pathology, Rowan University, Piscataway, NJ, USAS G Schilling - Institute for Social Research, University of Michigan, Ann Arbor, MI, USAJ S Perlmutter - Program in Occupational Therapy and Program in Physical Therapy, Washington University School of Medicine, St. Louis, MO, USAE A Hahn - Department of Medical Social Sciences, Northwestern University, Chicago, IL, USAJ S Lai - Institute for Health Services Research and Policy Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL, USAS Frank - Beth Israel Deaconess Medical Center, Boston, MA, USAK A Quaid - Department of Medical and Molecular Genetics, Indiana University, Indianapolis, IN, USAJ S Paulsen - Department of Psychology, The University of Iowa, Iowa City, IA, USAD Cella - Institute for Health Services Research and Policy Studies, Feinberg School of Medicine, Northwestern University, Chicago, IL, USAS M Goodnight - Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USAJ A Miner - Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MI, USAM A Nance - Hennepin County Medical Center, Minneapolis, MN, USA
- Resource Type
- Journal article
- Publication Details
- Quality of life research, Vol.25(10), pp.2403-2415
- DOI
- 10.1007/s11136-016-1354-y
- PMID
- 27393121
- PMCID
- PMC5011453
- NLM abbreviation
- Qual Life Res
- ISSN
- 0962-9343
- eISSN
- 1573-2649
- Grant note
- R01 NS040068 / NINDS NIH HHS R01 NS077946 / NINDS NIH HHS UL1 TR001108 / NCATS NIH HHS UL1 TR000433 / NCATS NIH HHS
- Language
- English
- Date published
- 10/2016
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984083252602771
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