A new measure for end of life planning, preparation, and preferences in Huntington disease

HDQLIFE end of life planning

Noelle E. Carlozzi*, E. A. Hahn, S. A. Frank, J. S. Perlmutter, N. D. Downing, M. K. McCormack, S. Barton, M. A. Nance, S. G. Schilling, Noelle Carlozzi, Praveen Dayalu, Stephen Schilling, Amy Austin, Matthew Canter, Siera Goodnight, Jennifer Miner, Nicholas Migliore, Jane Paulsen, Nancy Downing, Isabella DeSoriano & 31 others Courtney Shadrick, Amanda Miller, Kimberly Quaid, Melissa Wesson, Christopher Ross, Gregory Churchill, Mary Jane Ong, Susan Perlman, Brian Clemente, Aaron Fisher, Gloria Obialisi, Michael Rosco, Michael McCormack, Humberto Marin, Allison Dicke, Joel S. Perlmutter, Stacey Barton, Shineeka Smith, Martha Nance, Pat Ede, Stephen Rao, Anwar Ahmed, Michael Lengen, Lyla Mourany, Christine Reece, Michael Geschwind, Joseph Winer, David Cella, Richard Gershon, Elizabeth Hahn, Hdqlife Site Investigators And Coordinators

*Corresponding author for this work

Research output: Contribution to journalArticle

2 Citations (Scopus)

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 languageEnglish (US)
Pages (from-to)98-107
Number of pages10
JournalJournal of Neurology
Volume265
Issue number1
DOIs
StatePublished - Jan 1 2018

Fingerprint

Huntington Disease
Quality of Life
Psychometrics
Statistical Factor Analysis
Hospice Care
Terminal Care
Patient Preference
Focus Groups
Neurodegenerative Diseases

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

Carlozzi, N. E., Hahn, E. A., Frank, S. A., Perlmutter, J. S., Downing, N. D., McCormack, M. K., ... Hdqlife Site Investigators And Coordinators (2018). A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning. Journal of Neurology, 265(1), 98-107. https://doi.org/10.1007/s00415-017-8677-7
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. / A new measure for end of life planning, preparation, and preferences in Huntington disease : HDQLIFE end of life planning. In: Journal of Neurology. 2018 ; Vol. 265, No. 1. pp. 98-107.
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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.",
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Carlozzi, NE, Hahn, EA, Frank, SA, Perlmutter, JS, Downing, ND, McCormack, MK, Barton, S, Nance, MA, Schilling, SG, Carlozzi, N, Dayalu, P, Schilling, S, Austin, A, Canter, M, Goodnight, S, Miner, J, Migliore, N, Paulsen, J, Downing, N, DeSoriano, I, Shadrick, C, Miller, A, Quaid, K, Wesson, M, Ross, C, Churchill, G, Ong, MJ, Perlman, S, Clemente, B, Fisher, A, Obialisi, G, Rosco, M, McCormack, M, Marin, H, Dicke, A, Perlmutter, JS, Barton, S, Smith, S, Nance, M, Ede, P, Rao, S, Ahmed, A, Lengen, M, Mourany, L, Reece, C, Geschwind, M, Winer, J, Cella, D, Gershon, R, Hahn, E & Hdqlife Site Investigators And Coordinators 2018, 'A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning', Journal of Neurology, vol. 265, no. 1, pp. 98-107. https://doi.org/10.1007/s00415-017-8677-7

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 journalArticle

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)

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