Evidence map›Paper›PMID 29143208›Full record

ArticleJournal of neurology2018

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, HDQLIFE Site Investigators and Coordinators

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of neurology, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.

0numbers the graph read from it
0cells of the map it votes in
9citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

9 citing papers in PubMed.

  1. Article
  2. Primary Palliative Care in Huntington's Disease.Movement disorders clinical practice · 2023
    Article
  3. Article
  4. Hospice Care Experiences Among Decedents With Huntington's Disease.Journal of pain and symptom management · 2022
    Article
  5. Article
  6. Article
  7. Article
  8. Article
  9. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

10 authors.

Noelle E CarlozziDepartment 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.
E A HahnDepartment of Medical Social Sciences, Northwestern University, Chicago, IL, USA.
S A FrankBeth Israel Deaconess Medical Center, Boston, MA, USA.
J S PerlmutterDepartment of Neurology, Washington University School of Medicine, St. Louis, MO, USA.
N D DowningForensic Health Care College of Nursing, Texas A&M University, College Station, TX, USA.
M K McCormackDepartment of Psychiatry, Rutgers University-Robert Wood Johnson Medical School, Brunswick, NJ, USA.
S BartonDepartment of Neurology, Washington University School of Medicine, St. Louis, MO, USA.
M A NanceHennepin County Medical Center, Minneapolis, MN, USA.
S G SchillingInstitute for Social Research, University of Michigan, Ann Arbor, MI, USA.
HDQLIFE Site Investigators and Coordinators

Funding

Michigan Institute for Clinical and Health Research (MICHR)UL1TR002240 · NCATS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI LUMENG, JULIE C, MASHOUR, GEORGE ALEXANDER · 2017 to 2022
$54.9M
Michigan Institute for Clinical and Health Research (MCHR)UL1TR000433 · NCATS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI MASHOUR, GEORGE ALEXANDER · 2012 to 2016
$49.9M
NEUROBIOLOGICAL PREDICTORS OF HUNTINGTON'S DISEASER01NS040068 · NINDS · UNIVERSITY OF IOWA · PI PAULSEN, JANE S · 2001 to 2013
$48.5M
Validation of the HD-HRQOL (Huntington disease quality of life measure)R01NS077946 · NINDS · UNIVERSITY OF MICHIGAN AT ANN ARBOR · PI CARLOZZI, NOELLE E. · 2012 to 2016
$3.2M
Statistical disease modeling and clinimetrics to prepare for preventive trials in huntington diseaseR01NS103475 · NINDS · UNIVERSITY OF IOWA · PI PAULSEN, JANE S, ZHANG, YING · 2017 to 2018
$1.2M
NCATS NIH HHS UL1 TR000433NCATS NIH HHS UL1TR000433NCATS NIH HHS UL1 TR002240NIH HHS R01NS040068NINDS NIH HHS L30 NS066829NINDS NIH HHS R01 NS040068NINDS NIH HHS R01 NS077946NINDS NIH HHS R01NS077946NINDS NIH HHS R01 NS103475
6 · The paper itself

Abstract

backgroundHuntington 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.

aimThe purpose of this study was to develop a new measure to evaluate end of life planning.

designWe 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.

participantsParticipants included 508 individuals with pre-manifest or manifest Huntington disease.

resultsItem 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.

conclusionsThe 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.

Indexed as

AdultAgedFactor Analysis, StatisticalFemaleHumansHuntington DiseaseMaleMiddle AgedPsychometricsQuality of LifeReproducibility of ResultsTerminal CareEnd of lifeHDQLIFEHDQLIFE Site Investigators and CoordinatorsHealth-related quality of lifeHuntington diseasePatient-reported outcome (PRO)

Identifiers

PMID29143208
PMCPMC5762414

What OpenQuestion holds

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Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.