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J Neurol. 2018 Jan;265(1):98-107. doi: 10.1007/s00415-017-8677-7. Epub 2017 Nov 15.

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

Author information

1
Department of Physical Medicine and Rehabilitation, University of Michigan, North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G216, Ann Arbor, MI, 48109-2800, USA. carlozzi@med.umich.edu.
2
Department of Medical Social Sciences, Northwestern University, Chicago, IL, USA.
3
Beth Israel Deaconess Medical Center, Boston, MA, USA.
4
Department of Neurology, Washington University School of Medicine, St. Louis, MO, USA.
5
Departments of Radiology and Neuroscience, Program in Occupational Therapy and Program in Physical Therapy, Washington University, St. Louis, MO, USA.
6
Forensic Health Care College of Nursing, Texas A&M University, College Station, TX, USA.
7
Department of Psychiatry, Rutgers University-Robert Wood Johnson Medical School, Brunswick, NJ, USA.
8
Piscataway and Department of Pathology, Rowan University-SOM, Stratford, NJ, USA.
9
Hennepin County Medical Center, Minneapolis, MN, USA.
10
Institute for Social Research, University of Michigan, Ann Arbor, MI, USA.

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.

KEYWORDS:

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

PMID:
29143208
PMCID:
PMC5762414
DOI:
10.1007/s00415-017-8677-7
[Indexed for MEDLINE]
Free PMC Article

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