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.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 98-107 |
| Number of pages | 10 |
| Journal | Journal of Neurology |
| Volume | 265 |
| Issue number | 1 |
| DOIs | |
| State | Published - Jan 1 2018 |
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Keywords
- End of life
- HDQLIFE
- HDQLIFE Site Investigators and Coordinators
- Health-related quality of life
- Huntington disease
- Patient-reported outcome (PRO)
ASJC Scopus subject areas
- Neurology
- Clinical Neurology
Cite this
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A new measure for end of life planning, preparation, and preferences in Huntington disease : HDQLIFE end of life planning. / Carlozzi, Noelle E.; Hahn, E. A.; Frank, S. A.; Perlmutter, J. S.; Downing, N. D.; McCormack, M. K.; Barton, S.; Nance, M. A.; Schilling, S. G.; Carlozzi, Noelle; Dayalu, Praveen; Schilling, Stephen; Austin, Amy; Canter, Matthew; Goodnight, Siera; Miner, Jennifer; Migliore, Nicholas; Paulsen, Jane; Downing, Nancy; DeSoriano, Isabella; Shadrick, Courtney; Miller, Amanda; Quaid, Kimberly; Wesson, Melissa; Ross, Christopher; Churchill, Gregory; Ong, Mary Jane; Perlman, Susan; Clemente, Brian; Fisher, Aaron; Obialisi, Gloria; Rosco, Michael; McCormack, Michael; Marin, Humberto; Dicke, Allison; Perlmutter, Joel S.; Barton, Stacey; Smith, Shineeka; Nance, Martha; Ede, Pat; Rao, Stephen; Ahmed, Anwar; Lengen, Michael; Mourany, Lyla; Reece, Christine; Geschwind, Michael; Winer, Joseph; Cella, David; Gershon, Richard; Hahn, Elizabeth; Hdqlife Site Investigators And Coordinators.
In: Journal of Neurology, Vol. 265, No. 1, 01.01.2018, p. 98-107.Research output: Contribution to journal › Article
TY - JOUR
T1 - A new measure for end of life planning, preparation, and preferences in Huntington disease
T2 - HDQLIFE end of life planning
AU - Carlozzi, Noelle E.
AU - Hahn, E. A.
AU - Frank, S. A.
AU - Perlmutter, J. S.
AU - Downing, N. D.
AU - McCormack, M. K.
AU - Barton, S.
AU - Nance, M. A.
AU - Schilling, S. G.
AU - Carlozzi, Noelle
AU - Dayalu, Praveen
AU - Schilling, Stephen
AU - Austin, Amy
AU - Canter, Matthew
AU - Goodnight, Siera
AU - Miner, Jennifer
AU - Migliore, Nicholas
AU - Paulsen, Jane
AU - Downing, Nancy
AU - DeSoriano, Isabella
AU - Shadrick, Courtney
AU - Miller, Amanda
AU - Quaid, Kimberly
AU - Wesson, Melissa
AU - Ross, Christopher
AU - Churchill, Gregory
AU - Ong, Mary Jane
AU - Perlman, Susan
AU - Clemente, Brian
AU - Fisher, Aaron
AU - Obialisi, Gloria
AU - Rosco, Michael
AU - McCormack, Michael
AU - Marin, Humberto
AU - Dicke, Allison
AU - Perlmutter, Joel S.
AU - Barton, Stacey
AU - Smith, Shineeka
AU - Nance, Martha
AU - Ede, Pat
AU - Rao, Stephen
AU - Ahmed, Anwar
AU - Lengen, Michael
AU - Mourany, Lyla
AU - Reece, Christine
AU - Geschwind, Michael
AU - Winer, Joseph
AU - Cella, David
AU - Gershon, Richard
AU - Hahn, Elizabeth
AU - Hdqlife Site Investigators And Coordinators
PY - 2018/1/1
Y1 - 2018/1/1
N2 - 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.
AB - 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.
KW - End of life
KW - HDQLIFE
KW - HDQLIFE Site Investigators and Coordinators
KW - Health-related quality of life
KW - Huntington disease
KW - Patient-reported outcome (PRO)
UR - http://www.scopus.com/inward/record.url?scp=85034063065&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85034063065&partnerID=8YFLogxK
U2 - 10.1007/s00415-017-8677-7
DO - 10.1007/s00415-017-8677-7
M3 - Article
VL - 265
SP - 98
EP - 107
JO - Journal of Neurology
JF - Journal of Neurology
SN - 0340-5354
IS - 1
ER -