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 DeSorianoCourtney 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 journalArticlepeer-review

12 Scopus citations


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
Issue number1
StatePublished - Jan 1 2018


  • End of life
  • HDQLIFE Site Investigators and Coordinators
  • Health-related quality of life
  • Huntington disease
  • Patient-reported outcome (PRO)

ASJC Scopus subject areas

  • Clinical Neurology
  • Neurology


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