New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system)

N. E. Carlozzi*, N. R. Downing, M. K. McCormack, S. G. Schilling, J. S. Perlmutter, Elizabeth A Hahn, Jin-Shei Lai, S. Frank, K. A. Quaid, J. S. Paulsen, David Cella, S. M. Goodnight, J. A. Miner, M. A. Nance

*Corresponding author for this work

Research output: Contribution to journalArticle

16 Citations (Scopus)

Abstract

Purpose: Huntington disease (HD) is an incurable terminal disease. Thus, end of life (EOL) concerns are common in these individuals. A quantitative measure of EOL concerns in HD would enable a better understanding of how these concerns impact health-related quality of life. Therefore, we developed new measures of EOL for use in HD. Methods: An EOL item pool of 45 items was field tested in 507 individuals with prodromal or manifest HD. Exploratory and confirmatory factor analyses (EFA and CFA, respectively) were conducted to establish unidimensional item pools. Item response theory (IRT) and differential item functioning analyses were applied to the identified unidimensional item pools to select the final items. Results: EFA and CFA supported two separate unidimensional sets of items: Concern with Death and Dying (16 items), and Meaning and Purpose (14 items). IRT and DIF supported the retention of 12 Concern with Death and Dying items and 4 Meaning and Purpose items. IRT data supported the development of both a computer adaptive test (CAT) and a 6-item, static short form for Concern with Death and Dying. Conclusion: The HDQLIFE Concern with Death and Dying CAT and corresponding 6-item short form, and the 4-item calibrated HDQLIFE Meaning and Purpose scale demonstrate excellent psychometric properties. These new measures have the potential to provide clinically meaningful information about end-of-life preferences and concerns to clinicians and researchers working with individuals with HD. In addition, these measures may also be relevant and useful for other terminal conditions.

Original languageEnglish (US)
Pages (from-to)2403-2415
Number of pages13
JournalQuality of Life Research
Volume25
Issue number10
DOIs
StatePublished - Oct 1 2016

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Huntington Disease
Psychometrics
Statistical Factor Analysis
Quality of Life
Research Personnel
Patient Reported Outcome Measures

Keywords

  • End of life
  • HDQLIFE
  • Health-related quality of life
  • Huntington disease
  • Neuro-QoL
  • PROMIS
  • Patient-reported outcome (PRO)

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Carlozzi, N. E. ; Downing, N. R. ; McCormack, M. K. ; Schilling, S. G. ; Perlmutter, J. S. ; Hahn, Elizabeth A ; Lai, Jin-Shei ; Frank, S. ; Quaid, K. A. ; Paulsen, J. S. ; Cella, David ; Goodnight, S. M. ; Miner, J. A. ; Nance, M. A. / New measures to capture end of life concerns in Huntington disease : Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system). In: Quality of Life Research. 2016 ; Vol. 25, No. 10. pp. 2403-2415.
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title = "New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system)",
abstract = "Purpose: Huntington disease (HD) is an incurable terminal disease. Thus, end of life (EOL) concerns are common in these individuals. A quantitative measure of EOL concerns in HD would enable a better understanding of how these concerns impact health-related quality of life. Therefore, we developed new measures of EOL for use in HD. Methods: An EOL item pool of 45 items was field tested in 507 individuals with prodromal or manifest HD. Exploratory and confirmatory factor analyses (EFA and CFA, respectively) were conducted to establish unidimensional item pools. Item response theory (IRT) and differential item functioning analyses were applied to the identified unidimensional item pools to select the final items. Results: EFA and CFA supported two separate unidimensional sets of items: Concern with Death and Dying (16 items), and Meaning and Purpose (14 items). IRT and DIF supported the retention of 12 Concern with Death and Dying items and 4 Meaning and Purpose items. IRT data supported the development of both a computer adaptive test (CAT) and a 6-item, static short form for Concern with Death and Dying. Conclusion: The HDQLIFE Concern with Death and Dying CAT and corresponding 6-item short form, and the 4-item calibrated HDQLIFE Meaning and Purpose scale demonstrate excellent psychometric properties. These new measures have the potential to provide clinically meaningful information about end-of-life preferences and concerns to clinicians and researchers working with individuals with HD. In addition, these measures may also be relevant and useful for other terminal conditions.",
keywords = "End of life, HDQLIFE, Health-related quality of life, Huntington disease, Neuro-QoL, PROMIS, Patient-reported outcome (PRO)",
author = "Carlozzi, {N. E.} and Downing, {N. R.} and McCormack, {M. K.} and Schilling, {S. G.} and Perlmutter, {J. S.} and Hahn, {Elizabeth A} and Jin-Shei Lai and S. Frank and Quaid, {K. A.} and Paulsen, {J. S.} and David Cella and Goodnight, {S. M.} and Miner, {J. A.} and Nance, {M. A.}",
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Carlozzi, NE, Downing, NR, McCormack, MK, Schilling, SG, Perlmutter, JS, Hahn, EA, Lai, J-S, Frank, S, Quaid, KA, Paulsen, JS, Cella, D, Goodnight, SM, Miner, JA & Nance, MA 2016, 'New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system)', Quality of Life Research, vol. 25, no. 10, pp. 2403-2415. https://doi.org/10.1007/s11136-016-1354-y

New measures to capture end of life concerns in Huntington disease : Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system). / Carlozzi, N. E.; Downing, N. R.; McCormack, M. K.; Schilling, S. G.; Perlmutter, J. S.; Hahn, Elizabeth A; Lai, Jin-Shei; Frank, S.; Quaid, K. A.; Paulsen, J. S.; Cella, David; Goodnight, S. M.; Miner, J. A.; Nance, M. A.

In: Quality of Life Research, Vol. 25, No. 10, 01.10.2016, p. 2403-2415.

Research output: Contribution to journalArticle

TY - JOUR

T1 - New measures to capture end of life concerns in Huntington disease

T2 - Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system)

AU - Carlozzi, N. E.

AU - Downing, N. R.

AU - McCormack, M. K.

AU - Schilling, S. G.

AU - Perlmutter, J. S.

AU - Hahn, Elizabeth A

AU - Lai, Jin-Shei

AU - Frank, S.

AU - Quaid, K. A.

AU - Paulsen, J. S.

AU - Cella, David

AU - Goodnight, S. M.

AU - Miner, J. A.

AU - Nance, M. A.

PY - 2016/10/1

Y1 - 2016/10/1

N2 - Purpose: Huntington disease (HD) is an incurable terminal disease. Thus, end of life (EOL) concerns are common in these individuals. A quantitative measure of EOL concerns in HD would enable a better understanding of how these concerns impact health-related quality of life. Therefore, we developed new measures of EOL for use in HD. Methods: An EOL item pool of 45 items was field tested in 507 individuals with prodromal or manifest HD. Exploratory and confirmatory factor analyses (EFA and CFA, respectively) were conducted to establish unidimensional item pools. Item response theory (IRT) and differential item functioning analyses were applied to the identified unidimensional item pools to select the final items. Results: EFA and CFA supported two separate unidimensional sets of items: Concern with Death and Dying (16 items), and Meaning and Purpose (14 items). IRT and DIF supported the retention of 12 Concern with Death and Dying items and 4 Meaning and Purpose items. IRT data supported the development of both a computer adaptive test (CAT) and a 6-item, static short form for Concern with Death and Dying. Conclusion: The HDQLIFE Concern with Death and Dying CAT and corresponding 6-item short form, and the 4-item calibrated HDQLIFE Meaning and Purpose scale demonstrate excellent psychometric properties. These new measures have the potential to provide clinically meaningful information about end-of-life preferences and concerns to clinicians and researchers working with individuals with HD. In addition, these measures may also be relevant and useful for other terminal conditions.

AB - Purpose: Huntington disease (HD) is an incurable terminal disease. Thus, end of life (EOL) concerns are common in these individuals. A quantitative measure of EOL concerns in HD would enable a better understanding of how these concerns impact health-related quality of life. Therefore, we developed new measures of EOL for use in HD. Methods: An EOL item pool of 45 items was field tested in 507 individuals with prodromal or manifest HD. Exploratory and confirmatory factor analyses (EFA and CFA, respectively) were conducted to establish unidimensional item pools. Item response theory (IRT) and differential item functioning analyses were applied to the identified unidimensional item pools to select the final items. Results: EFA and CFA supported two separate unidimensional sets of items: Concern with Death and Dying (16 items), and Meaning and Purpose (14 items). IRT and DIF supported the retention of 12 Concern with Death and Dying items and 4 Meaning and Purpose items. IRT data supported the development of both a computer adaptive test (CAT) and a 6-item, static short form for Concern with Death and Dying. Conclusion: The HDQLIFE Concern with Death and Dying CAT and corresponding 6-item short form, and the 4-item calibrated HDQLIFE Meaning and Purpose scale demonstrate excellent psychometric properties. These new measures have the potential to provide clinically meaningful information about end-of-life preferences and concerns to clinicians and researchers working with individuals with HD. In addition, these measures may also be relevant and useful for other terminal conditions.

KW - End of life

KW - HDQLIFE

KW - Health-related quality of life

KW - Huntington disease

KW - Neuro-QoL

KW - PROMIS

KW - Patient-reported outcome (PRO)

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