HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)

N. E. Carlozzi; S. G. Schilling; J. S. Lai; J. S. Paulsen; E. A. Hahn; J. S. Perlmutter; C. A. Ross; N. R. Downing; A. L. Kratz; M. K. McCormack; M. A. Nance; K. A. Quaid; J. C. Stout; R. C. Gershon; R. E. Ready; J. A. Miner; S. K. Barton; S. L. Perlman; S. M. Rao; S. Frank; I. Shoulson; H. Marin; M. D. Geschwind; P. Dayalu; S. M. Goodnight; D. Cella

doi:10.1007/s11136-016-1386-3

HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)

N. E. Carlozzi, S. G. Schilling, J. S. Lai, J. S. Paulsen, E. A. Hahn, J. S. Perlmutter, C. A. Ross, N. R. Downing, A. L. Kratz, M. K. McCormack, M. A. Nance, K. A. Quaid, J. C. Stout, R. C. Gershon, R. E. Ready, J. A. Miner, S. K. Barton, S. L. Perlman, S. M. Rao, S. FrankI. Shoulson, H. Marin, M. D. Geschwind, P. Dayalu, S. M. Goodnight, D. Cella

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Abstract

Purpose: Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL—Quality of Life in Neurological Disorders and PROMIS—Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS methodology to develop new, HD-specific content. Methods: New item pools were developed using cognitive debriefing with individuals with HD, and expert, literacy, and translatability reviews. Existing item banks and new item pools were field tested in 536 individuals with prodromal, early-, or late-stage HD. Results: Moderate to strong relationships between Neuro-QoL/PROMIS measures and generic self-report measures of HRQOL, and moderate relationships between Neuro-QoL/PROMIS and clinician-rated measures of similar constructs supported the validity of Neuro-QoL/PROMIS in individuals with HD. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new item banks for Chorea, Speech Difficulties, Swallowing Difficulties, and Concern with Death and Dying, with corresponding six-item short forms. A four-item short form was developed for Meaning and Purpose. Conclusions: HDQLIFE encompasses both validated Neuro-QoL/PROMIS measures, as well as five new scales in order to provide a comprehensive assessment of HRQOL in HD.

Original language	English
Pages (from-to)	2441-2455
Number of pages	15
Journal	Quality of Life Research
Volume	25
Issue number	10
DOIs	https://doi.org/10.1007/s11136-016-1386-3
State	Published - Oct 1 2016

Keywords

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

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10.1007/s11136-016-1386-3

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Carlozzi, N. E., Schilling, S. G., Lai, J. S., Paulsen, J. S., Hahn, E. A., Perlmutter, J. S., Ross, C. A., Downing, N. R., Kratz, A. L., McCormack, M. K., Nance, M. A., Quaid, K. A., Stout, J. C., Gershon, R. C., Ready, R. E., Miner, J. A., Barton, S. K., Perlman, S. L., Rao, S. M., ... Cella, D. (2016). HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD). Quality of Life Research, 25(10), 2441-2455. https://doi.org/10.1007/s11136-016-1386-3

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title = "HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)",

abstract = "Purpose: Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL—Quality of Life in Neurological Disorders and PROMIS—Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS methodology to develop new, HD-specific content. Methods: New item pools were developed using cognitive debriefing with individuals with HD, and expert, literacy, and translatability reviews. Existing item banks and new item pools were field tested in 536 individuals with prodromal, early-, or late-stage HD. Results: Moderate to strong relationships between Neuro-QoL/PROMIS measures and generic self-report measures of HRQOL, and moderate relationships between Neuro-QoL/PROMIS and clinician-rated measures of similar constructs supported the validity of Neuro-QoL/PROMIS in individuals with HD. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new item banks for Chorea, Speech Difficulties, Swallowing Difficulties, and Concern with Death and Dying, with corresponding six-item short forms. A four-item short form was developed for Meaning and Purpose. Conclusions: HDQLIFE encompasses both validated Neuro-QoL/PROMIS measures, as well as five new scales in order to provide a comprehensive assessment of HRQOL in HD.",

keywords = "HDQLIFE, Health-related quality of life, Huntington disease, Neuro-QoL, PROMIS, Patient-reported outcome (PRO)",

author = "Carlozzi, {N. E.} and Schilling, {S. G.} and Lai, {J. S.} and Paulsen, {J. S.} and Hahn, {E. A.} and Perlmutter, {J. S.} and Ross, {C. A.} and Downing, {N. R.} and Kratz, {A. L.} and McCormack, {M. K.} and Nance, {M. A.} and Quaid, {K. A.} and Stout, {J. C.} and Gershon, {R. C.} and Ready, {R. E.} and Miner, {J. A.} and Barton, {S. K.} and Perlman, {S. L.} and Rao, {S. M.} and S. Frank and I. Shoulson and H. Marin and Geschwind, {M. D.} and P. Dayalu and Goodnight, {S. M.} and D. Cella",

note = "Publisher Copyright: {\textcopyright} 2016, Springer International Publishing Switzerland.",

year = "2016",

month = oct,

day = "1",

doi = "10.1007/s11136-016-1386-3",

language = "English",

volume = "25",

pages = "2441--2455",

journal = "Quality of Life Research",

issn = "0962-9343",

number = "10",

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Carlozzi, NE, Schilling, SG, Lai, JS, Paulsen, JS, Hahn, EA, Perlmutter, JS, Ross, CA, Downing, NR, Kratz, AL, McCormack, MK, Nance, MA, Quaid, KA, Stout, JC, Gershon, RC, Ready, RE, Miner, JA, Barton, SK, Perlman, SL, Rao, SM, Frank, S, Shoulson, I, Marin, H, Geschwind, MD, Dayalu, P, Goodnight, SM & Cella, D 2016, 'HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)', Quality of Life Research, vol. 25, no. 10, pp. 2441-2455. https://doi.org/10.1007/s11136-016-1386-3

TY - JOUR

T1 - HDQLIFE

T2 - development and assessment of health-related quality of life in Huntington disease (HD)

AU - Carlozzi, N. E.

AU - Schilling, S. G.

AU - Lai, J. S.

AU - Paulsen, J. S.

AU - Hahn, E. A.

AU - Perlmutter, J. S.

AU - Ross, C. A.

AU - Downing, N. R.

AU - Kratz, A. L.

AU - McCormack, M. K.

AU - Nance, M. A.

AU - Quaid, K. A.

AU - Stout, J. C.

AU - Gershon, R. C.

AU - Ready, R. E.

AU - Miner, J. A.

AU - Barton, S. K.

AU - Perlman, S. L.

AU - Rao, S. M.

AU - Frank, S.

AU - Shoulson, I.

AU - Marin, H.

AU - Geschwind, M. D.

AU - Dayalu, P.

AU - Goodnight, S. M.

AU - Cella, D.

PY - 2016/10/1

Y1 - 2016/10/1

N2 - Purpose: Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL—Quality of Life in Neurological Disorders and PROMIS—Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS methodology to develop new, HD-specific content. Methods: New item pools were developed using cognitive debriefing with individuals with HD, and expert, literacy, and translatability reviews. Existing item banks and new item pools were field tested in 536 individuals with prodromal, early-, or late-stage HD. Results: Moderate to strong relationships between Neuro-QoL/PROMIS measures and generic self-report measures of HRQOL, and moderate relationships between Neuro-QoL/PROMIS and clinician-rated measures of similar constructs supported the validity of Neuro-QoL/PROMIS in individuals with HD. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new item banks for Chorea, Speech Difficulties, Swallowing Difficulties, and Concern with Death and Dying, with corresponding six-item short forms. A four-item short form was developed for Meaning and Purpose. Conclusions: HDQLIFE encompasses both validated Neuro-QoL/PROMIS measures, as well as five new scales in order to provide a comprehensive assessment of HRQOL in HD.

AB - Purpose: Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL—Quality of Life in Neurological Disorders and PROMIS—Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS methodology to develop new, HD-specific content. Methods: New item pools were developed using cognitive debriefing with individuals with HD, and expert, literacy, and translatability reviews. Existing item banks and new item pools were field tested in 536 individuals with prodromal, early-, or late-stage HD. Results: Moderate to strong relationships between Neuro-QoL/PROMIS measures and generic self-report measures of HRQOL, and moderate relationships between Neuro-QoL/PROMIS and clinician-rated measures of similar constructs supported the validity of Neuro-QoL/PROMIS in individuals with HD. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new item banks for Chorea, Speech Difficulties, Swallowing Difficulties, and Concern with Death and Dying, with corresponding six-item short forms. A four-item short form was developed for Meaning and Purpose. Conclusions: HDQLIFE encompasses both validated Neuro-QoL/PROMIS measures, as well as five new scales in order to provide a comprehensive assessment of HRQOL in HD.

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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U2 - 10.1007/s11136-016-1386-3

DO - 10.1007/s11136-016-1386-3

M3 - Article

C2 - 27522213

AN - SCOPUS:84982129618

SN - 0962-9343

VL - 25

SP - 2441

EP - 2455

JO - Quality of Life Research

JF - Quality of Life Research

IS - 10

ER -

HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)

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