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TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury

OBJECTIVE: To use a patient-centered approach or participatory action research design combined with advanced psychometrics to develop a comprehensive patient-reported outcomes (PRO) measurement system specifically for individuals with traumatic brain injury (TBI). This TBI Quality-of-Life (TBI-QOL)...

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Autores principales: Tulsky, David S., Kisala, Pamela A., Victorson, David, Carlozzi, Noelle, Bushnik, Tamara, Sherer, Mark, Choi, Seung W., Heinemann, Allen W., Chiaravalloti, Nancy, Sander, Angelle M., Englander, Jeffrey, Hanks, Robin, Kolakowsky-Hayner, Stephanie, Roth, Elliot, Gershon, Richard, Rosenthal, Mitchell, Cella, David
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Aspen Publications 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4697960/
https://www.ncbi.nlm.nih.gov/pubmed/25931184
http://dx.doi.org/10.1097/HTR.0000000000000131
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author Tulsky, David S.
Kisala, Pamela A.
Victorson, David
Carlozzi, Noelle
Bushnik, Tamara
Sherer, Mark
Choi, Seung W.
Heinemann, Allen W.
Chiaravalloti, Nancy
Sander, Angelle M.
Englander, Jeffrey
Hanks, Robin
Kolakowsky-Hayner, Stephanie
Roth, Elliot
Gershon, Richard
Rosenthal, Mitchell
Cella, David
author_facet Tulsky, David S.
Kisala, Pamela A.
Victorson, David
Carlozzi, Noelle
Bushnik, Tamara
Sherer, Mark
Choi, Seung W.
Heinemann, Allen W.
Chiaravalloti, Nancy
Sander, Angelle M.
Englander, Jeffrey
Hanks, Robin
Kolakowsky-Hayner, Stephanie
Roth, Elliot
Gershon, Richard
Rosenthal, Mitchell
Cella, David
author_sort Tulsky, David S.
collection PubMed
description OBJECTIVE: To use a patient-centered approach or participatory action research design combined with advanced psychometrics to develop a comprehensive patient-reported outcomes (PRO) measurement system specifically for individuals with traumatic brain injury (TBI). This TBI Quality-of-Life (TBI-QOL) measurement system expands the work of other large PRO measurement initiatives, that is, the Patient-Reported Outcomes Measurement Information System and the Neurology Quality-of-Life measurement initiative. SETTING: Five TBI Model Systems centers across the United States. PARTICIPANTS: Adults with TBI. DESIGN: Classical and modern test development methodologies were used. Qualitative input was obtained from individuals with TBI, TBI clinicians, and caregivers of individuals with TBI through multiple methods, including focus groups, individual interviews, patient consultation, and cognitive debriefing interviews. Item pools were field tested in a large multisite sample (n = 675) and calibrated using item response theory methods. MAIN OUTCOMES MEASURES: Twenty-two TBI-QOL item banks/scales. RESULTS: The TBI-QOL consists of 20 independent calibrated item banks and 2 uncalibrated scales that measure physical, emotional, cognitive, and social aspects of health-related quality of life. CONCLUSIONS: The TBI-QOL measurement system has potential as a common data element in TBI research and to enhance collection of health-related quality-of-life and PRO data in rehabilitation research and clinical settings.
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spelling pubmed-46979602016-01-28 TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury Tulsky, David S. Kisala, Pamela A. Victorson, David Carlozzi, Noelle Bushnik, Tamara Sherer, Mark Choi, Seung W. Heinemann, Allen W. Chiaravalloti, Nancy Sander, Angelle M. Englander, Jeffrey Hanks, Robin Kolakowsky-Hayner, Stephanie Roth, Elliot Gershon, Richard Rosenthal, Mitchell Cella, David J Head Trauma Rehabil TBI-QOL Studies OBJECTIVE: To use a patient-centered approach or participatory action research design combined with advanced psychometrics to develop a comprehensive patient-reported outcomes (PRO) measurement system specifically for individuals with traumatic brain injury (TBI). This TBI Quality-of-Life (TBI-QOL) measurement system expands the work of other large PRO measurement initiatives, that is, the Patient-Reported Outcomes Measurement Information System and the Neurology Quality-of-Life measurement initiative. SETTING: Five TBI Model Systems centers across the United States. PARTICIPANTS: Adults with TBI. DESIGN: Classical and modern test development methodologies were used. Qualitative input was obtained from individuals with TBI, TBI clinicians, and caregivers of individuals with TBI through multiple methods, including focus groups, individual interviews, patient consultation, and cognitive debriefing interviews. Item pools were field tested in a large multisite sample (n = 675) and calibrated using item response theory methods. MAIN OUTCOMES MEASURES: Twenty-two TBI-QOL item banks/scales. RESULTS: The TBI-QOL consists of 20 independent calibrated item banks and 2 uncalibrated scales that measure physical, emotional, cognitive, and social aspects of health-related quality of life. CONCLUSIONS: The TBI-QOL measurement system has potential as a common data element in TBI research and to enhance collection of health-related quality-of-life and PRO data in rehabilitation research and clinical settings. Aspen Publications 2016-01 2015-01-06 /pmc/articles/PMC4697960/ /pubmed/25931184 http://dx.doi.org/10.1097/HTR.0000000000000131 Text en © 2016 Wolters Kluwer Health, Inc. All rights reserved. This is an open-access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially.
spellingShingle TBI-QOL Studies
Tulsky, David S.
Kisala, Pamela A.
Victorson, David
Carlozzi, Noelle
Bushnik, Tamara
Sherer, Mark
Choi, Seung W.
Heinemann, Allen W.
Chiaravalloti, Nancy
Sander, Angelle M.
Englander, Jeffrey
Hanks, Robin
Kolakowsky-Hayner, Stephanie
Roth, Elliot
Gershon, Richard
Rosenthal, Mitchell
Cella, David
TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury
title TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury
title_full TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury
title_fullStr TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury
title_full_unstemmed TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury
title_short TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury
title_sort tbi-qol: development and calibration of item banks to measure patient reported outcomes following traumatic brain injury
topic TBI-QOL Studies
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4697960/
https://www.ncbi.nlm.nih.gov/pubmed/25931184
http://dx.doi.org/10.1097/HTR.0000000000000131
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