Measuring cognitive assessment and intervention burden in patients with acquired brain injured: Development of the "How Much is Too Much" questionnaire

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dc.contributor.authorTomaszczyk, Jennifer C
dc.contributor.authorSharma, Bhanu
dc.contributor.authorChan, Albert A
dc.contributor.authorColella, Brenda
dc.contributor.authorMok, Jenkin N
dc.contributor.authorBeaton, Dorcas
dc.contributor.authorChristensen, Bruce
dc.contributor.authorGreen, Robin E A
dc.date.accessioned2020-04-15T23:11:27Z
dc.date.available2020-04-15T23:11:27Z
dc.date.issued2018
dc.date.updated2022-05-29T08:17:52Z
dc.description.abstractObjective: To design and preliminarily test a questionnaire intended to measure patient treatment burden resulting from participation in cognitive assessments and interventions. Methods: An expert consensus process was used to develop the concept of patient treatment burden and to determine the first set of questionnaire items and administration protocol. The pilot questionnaire was administered to 20 patients with mild to severe acquired brain injuries on completion of a 2-h or longer neuropsychological assessment. Following preliminary testing, the questionnaire was revised and re-evaluated by a second expert panel and content validity was assessed. Results: Burden was defined as psychologically and/or physically aversive symptoms in response to cognitive assessment or intervention. The first questionnaire contained 21 items assigned to 3 categories: physical, cognitive, and emotional. Eightyfive percent of patients endorsed symptom level increases, with "tired/fatigued" the most frequently endorsed item (80% of patients). Instructions and test items were easily understood, and the questionnaire was quick to administer. Content validity ratio (CVR) of the revised questionnaire yielded 23 acceptable items and a subset met the highest CVR threshold (>0.78). Conclusion: This patient-reported outcome will ultimately help patients give voice to aversive experiences, and help clinicians and researchers to monitor and adapt assessments/treatments appropriately. Future steps in development are described.
dc.format.mimetypeapplication/pdfen_AU
dc.identifier.issn1650-1977en_AU
dc.identifier.urihttp://hdl.handle.net/1885/202973
dc.language.isoen_AUen_AU
dc.provenanceThis is an open access article under the CC BY-NC license. www.medicaljournals.se/jrm Journal Compilation © 2018 Foundation of Rehabilitation Informationen_AU
dc.publisherTaylor & Francis
dc.rights© 2018
dc.rights.licenseCC BY-NC licenseen_AU
dc.sourceJournal of Rehabilitation Medicine
dc.titleMeasuring cognitive assessment and intervention burden in patients with acquired brain injured: Development of the "How Much is Too Much" questionnaire
dc.typeJournal article
dcterms.accessRightsOpen Accessen_AU
local.bibliographicCitation.issue6en_AU
local.bibliographicCitation.lastpage526en_AU
local.bibliographicCitation.startpage519en_AU
local.contributor.affiliationTomaszczyk, Jennifer C, Toronto Rehabilitation Institute - University Health Networken_AU
local.contributor.affiliationSharma, Bhanu, Toronto Rehabilitation Instituteen_AU
local.contributor.affiliationChan, Albert A, Toronto Rehabilitation Instituteen_AU
local.contributor.affiliationColella, Brenda, Toronto Rehabilitation Institute - University Health Networken_AU
local.contributor.affiliationMok, Jenkin N, University of Torontoen_AU
local.contributor.affiliationBeaton, Dorcas, University of Torontoen_AU
local.contributor.affiliationChristensen, Bruce, College of Health and Medicine, ANUen_AU
local.contributor.affiliationGreen, Robin E A, University of Torontoen_AU
local.contributor.authoremailu5665029@anu.edu.auen_AU
local.contributor.authoruidChristensen, Bruce, u5665029en_AU
local.description.notesImported from ARIES
local.identifier.absfor170205 - Neurocognitive Patterns and Neural Networksen_AU
local.identifier.absseo920409 - Injury Controlen_AU
local.identifier.ariespublicationu4485658xPUB1933en_AU
local.identifier.citationvolume50en_AU
local.identifier.doi10.2340/16501977-2344en_AU
local.identifier.scopusID2-s2.0-85049412347
local.identifier.thomsonID000437194300006
local.identifier.uidSubmittedByu4485658en_AU
local.publisher.urlhttps://www.routledge.com/en_AU
local.type.statusPublished Versionen_AU

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