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

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Title: HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD).
Authors: Carlozzi, N., Schilling, S., Lai, J.-S., Paulsen, J., Hahn, E., Perlmutter, J., Ross, C., Downing, N., Kratz, A., McCormack, M., Nance, M., Quaid, K., Stout, J., Gershon, R., Ready, R., Miner, J., Barton, S., Perlman, S., Rao, S., Frank, S.
Source: Quality of Life Research. Oct2016, Vol. 25 Issue 10, p2441-2455. 15p.
Subjects: Huntington disease, Speech disorders, Health outcome assessment, Quality of life, Self-evaluation, Questionnaires, Research funding, Sickness Impact Profile, Psychology
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. [ABSTRACT FROM AUTHOR]
Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD).
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  Data: <searchLink fieldCode="AR" term="%22Carlozzi%2C+N%2E%22">Carlozzi, N.</searchLink><br /><searchLink fieldCode="AR" term="%22Schilling%2C+S%2E%22">Schilling, S.</searchLink><br /><searchLink fieldCode="AR" term="%22Lai%2C+J%2E-S%2E%22">Lai, J.-S.</searchLink><br /><searchLink fieldCode="AR" term="%22Paulsen%2C+J%2E%22">Paulsen, J.</searchLink><br /><searchLink fieldCode="AR" term="%22Hahn%2C+E%2E%22">Hahn, E.</searchLink><br /><searchLink fieldCode="AR" term="%22Perlmutter%2C+J%2E%22">Perlmutter, J.</searchLink><br /><searchLink fieldCode="AR" term="%22Ross%2C+C%2E%22">Ross, C.</searchLink><br /><searchLink fieldCode="AR" term="%22Downing%2C+N%2E%22">Downing, N.</searchLink><br /><searchLink fieldCode="AR" term="%22Kratz%2C+A%2E%22">Kratz, A.</searchLink><br /><searchLink fieldCode="AR" term="%22McCormack%2C+M%2E%22">McCormack, M.</searchLink><br /><searchLink fieldCode="AR" term="%22Nance%2C+M%2E%22">Nance, M.</searchLink><br /><searchLink fieldCode="AR" term="%22Quaid%2C+K%2E%22">Quaid, K.</searchLink><br /><searchLink fieldCode="AR" term="%22Stout%2C+J%2E%22">Stout, J.</searchLink><br /><searchLink fieldCode="AR" term="%22Gershon%2C+R%2E%22">Gershon, R.</searchLink><br /><searchLink fieldCode="AR" term="%22Ready%2C+R%2E%22">Ready, R.</searchLink><br /><searchLink fieldCode="AR" term="%22Miner%2C+J%2E%22">Miner, J.</searchLink><br /><searchLink fieldCode="AR" term="%22Barton%2C+S%2E%22">Barton, S.</searchLink><br /><searchLink fieldCode="AR" term="%22Perlman%2C+S%2E%22">Perlman, S.</searchLink><br /><searchLink fieldCode="AR" term="%22Rao%2C+S%2E%22">Rao, S.</searchLink><br /><searchLink fieldCode="AR" term="%22Frank%2C+S%2E%22">Frank, S.</searchLink>
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  Data: <searchLink fieldCode="DE" term="%22Huntington+disease%22">Huntington disease</searchLink><br /><searchLink fieldCode="DE" term="%22Speech+disorders%22">Speech disorders</searchLink><br /><searchLink fieldCode="DE" term="%22Health+outcome+assessment%22">Health outcome assessment</searchLink><br /><searchLink fieldCode="DE" term="%22Quality+of+life%22">Quality of life</searchLink><br /><searchLink fieldCode="DE" term="%22Self-evaluation%22">Self-evaluation</searchLink><br /><searchLink fieldCode="DE" term="%22Questionnaires%22">Questionnaires</searchLink><br /><searchLink fieldCode="DE" term="%22Research+funding%22">Research funding</searchLink><br /><searchLink fieldCode="DE" term="%22Sickness+Impact+Profile%22">Sickness Impact Profile</searchLink><br /><searchLink fieldCode="DE" term="%22Psychology%22">Psychology</searchLink>
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  Data: <bold>Purpose: </bold>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.<bold>Methods: </bold>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.<bold>Results: </bold>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.<bold>Conclusions: </bold>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. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Quality of Life Research is the property of Springer Nature and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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