HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties.
Purpose: Huntington disease (HD) is an autosomal dominant neurodegenerative disease which results in several progressive symptoms, including bulbar dysfunction (i.e., speech and swallowing difficulties). Although difficulties in speech and swallowing in HD have a negative impact on health-related qu...
| Publicado en: | Quality of Life Research Vol. 25; no. 10; pp. 2417 - 2428 |
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| Autores principales: | , , , , , , , , , , , , , , , , , |
| Formato: | research Journal Article |
| Publicado: |
Springer Nature
Oct2016
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=117879997&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 117879997 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09629343 GPQ jtl: Quality of Life Research issn: 09629343 maglogo: N pubinfo: dt: Oct2016 vid: 25 iid: 10 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 117879997 117879997 NLM27038054 117879997 10.1007/s11136-016-1273-y NLM27038054 PMC5011441 [Available on 10/01/17] 117879997 ppf: 2417 ppct: 11 formats: fmt: @attributes: type: P tig: atl: HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties. aug: au: Carlozzi, N. Schilling, S. Lai, J.-S. Perlmutter, J. Nance, M. Waljee, J. Miner, J. Barton, S. Goodnight, S. Dayalu, P. Carlozzi, N E Schilling, S G Perlmutter, J S Nance, M A Waljee, J F Miner, J A Barton, S K Goodnight, S M affil: Department of Physical Medicine and Rehabilitation , University of Michigan , North Campus Research Complex, 2800 Plymouth Road, Building NCRC B14, Room G216 Ann Arbor 48109-2800 USA sug: subj: Huntington's Disease Psychosocial Factors Deglutition Disorders Speech Disorders Therapy Computers and Computerization Utilization Adolescence Young Adult Reproducibility of Results Aged, 80 and Over Male Female Aged Adult Middle Age Sickness Impact Profile Human Funding Source Questionnaires Adolescent: 13-18 years Aged, 80 & over Aged: 65+ years Adult: 19-44 years Middle Aged: 45-64 years Male Female ab: Purpose: Huntington disease (HD) is an autosomal dominant neurodegenerative disease which results in several progressive symptoms, including bulbar dysfunction (i.e., speech and swallowing difficulties). Although difficulties in speech and swallowing in HD have a negative impact on health-related quality of life, no patient-reported outcome measure exists to capture these difficulties that are specific to HD. Thus, we developed a new patient-reported outcome measure for use in the Huntington Disease Health-Related Quality of Life (HDQLIFE) Measurement System that focused on the impact that difficulties with speech and swallowing have on HRQOL in HD.Methods: Five hundred and seven individuals with prodromal and/or manifest HD completed 47 newly developed items examining speech and swallowing difficulties. Unidimensional item pools were identified using exploratory factor analysis and confirmatory factor analysis (EFA and CFA, respectively). Item response theory (IRT) was used to calibrate the final measures.Results: EFA and CFA identified two separate unidimensional sets of items: Speech Difficulties (27 items) and Swallowing Difficulties (16 items). Items were calibrated separately for these two measures and resulted in item banks that can be administered as computer adaptive tests (CATs) and/or 6-item, static short forms. Reliability of both of these measures was supported through high correlations between the simulated CAT scores and the full item bank.Conclusions: CATs and 6-item calibrated short forms were developed for HDQLIFE Speech Difficulties and HDQLIFE Swallowing Difficulties. These measures both demonstrate excellent psychometric properties and may have clinical utility in other populations where speech and swallowing difficulties are prevalent. pubtype: Academic Journal doctype: research Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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