Journal article
A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning
Journal of neurology, Vol.265(1), pp.98-107
01/01/2018
DOI: 10.1007/s00415-017-8677-7
PMCID: PMC5762414
PMID: 29143208
Abstract
Background Huntington disease is a fatal inherited neurodegenerative disease. Because the end result of Huntington disease is death due to Huntington disease-related causes, there is a need for better understanding and caring for individuals at their end of life. Aim The purpose of this study was to develop a new measure to evaluate end of life planning. Design We conducted qualitative focus groups, solicited expert input, and completed a literature review to develop a 16-item measure to evaluate important aspects of end of life planning for Huntington disease. Item response theory and differential item functioning analyses were utilized to examine the psychometric properties of items; exploratory factor analysis was used to establish meaningful subscales. Participants Participants included 508 individuals with pre-manifest or manifest Huntington disease. Results Item response theory supported the retention of all 16 items on the huntington disease quality of life (“HDQLIFE”) end of life planning measure. Exploratory factor analysis supported a four-factor structure: legal planning, financial planning, preferences for hospice care, and preferences for conditions (locations, surroundings, etc.) at the time of death. Although a handful of items exhibited some evidence of differential item functioning, these items were retained due to their relevant clinical content. The final 16-item scale includes an overall total score and four subscale scores that reflect the different end of life planning constructs. Conclusions The 16-item HDQLIFE end of life planning measure demonstrates adequate psychometric properties; it may be a useful tool for clinicians to clarify patients’ preferences about end of life care.
Details
- Title: Subtitle
- A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning
- Creators
- Noelle Carlozzi - University of MichiganE Hahn - Northwestern UniversityS Frank - Hadassah Medical CenterJ Perlmutter - Washington UniversityN Downing - Texas A&M UniversityM McCormackS Barton - Washington University School of MedicineM Nance - Hennepin County Medical CenterS G Schilling - University of MichiganPraveen DayaluAmy AustinMatthew CanterSiera GoodnightJennifer MinerNicholas MiglioreJane PaulsenNancy DowningIsabella DeSorianoCourtney ShadrickAmanda MillerKimberly QuaidMelissa WessonChristopher RossGregory ChurchillMary OngSusan PerlmanBrian ClementeAaron FisherGloria ObialisiMichael RoscoMichael McCormackHumberto MarinAllison DickeStacey BartonShineeka SmithPat EdeStephen Rao - Cleveland ClinicAhmed AnwarMichael LengenLyla MouranyChristine ReeceMichael GeschwindJoseph WinerDavid CellaRichard GershonElizabeth HahnJin-Shei LaiHDQLIFE Site Investigators
- Resource Type
- Journal article
- Publication Details
- Journal of neurology, Vol.265(1), pp.98-107
- DOI
- 10.1007/s00415-017-8677-7
- PMID
- 29143208
- PMCID
- PMC5762414
- NLM abbreviation
- J Neurol
- ISSN
- 0340-5354
- eISSN
- 1432-1459
- Publisher
- Springer Nature B.V
- Grant note
- DOI: 10.13039/100000065, name: National Institute of Neurological Disorders and Stroke, award: R01NS077946; DOI: 10.13039/100006108, name: National Center for Advancing Translational Sciences, award: UL1TR000433; DOI: 10.13039/100000002, name: National Institutes of Health, award: R01NS040068; DOI: 10.13039/100005725, name: CHDI Foundation
- Language
- English
- Date published
- 01/01/2018
- Academic Unit
- Psychiatry; Psychological and Brain Sciences
- Record Identifier
- 9984383304502771
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