Coordinating outcomes measurement in ataxia research: Do some widely used generic rating scales tick the boxes?
Identifieur interne : 003511 ( Main/Exploration ); précédent : 003510; suivant : 003512Coordinating outcomes measurement in ataxia research: Do some widely used generic rating scales tick the boxes?
Auteurs : Afsane Riazi [Royaume-Uni] ; Stefan J. Cano [Royaume-Uni] ; J. Mark Cooper [Royaume-Uni] ; Jane L. Bradley [Royaume-Uni] ; Anthony H. V. Schapira [Royaume-Uni] ; Jeremy C. Hobart [Royaume-Uni]Source :
- Movement Disorders [ 0885-3185 ] ; 2006-09.
Descripteurs français
- Pascal (Inist)
- Wicri :
- topic : Homme.
English descriptors
- KwdEn :
- Activities of Daily Living (classification), Adolescent, Adult, Ataxia, Female, Friedreich Ataxia (diagnosis), Friedreich Ataxia (genetics), Friedreich Ataxia (psychology), Friedreich Ataxia (therapy), Friedreich ataxia, Friedreich's ataxia (FA), Health Status Indicators, Health Surveys, Health status, Human, Humans, Male, Middle Aged, Nervous system diseases, Neurologic Examination (statistics & numerical data), Outcome Assessment (Health Care) (statistics & numerical data), Prognosis, Psychometrics, Psychometrics (statistics & numerical data), Quality of Life (psychology), Questionnaires, Reproducibility of Results, Sickness Impact Profile, health status measures, patient‐based outcome measures, psychometric.
- MESH :
- classification : Activities of Daily Living.
- diagnosis : Friedreich Ataxia.
- genetics : Friedreich Ataxia.
- psychology : Friedreich Ataxia, Quality of Life.
- statistics & numerical data : Neurologic Examination, Outcome Assessment (Health Care), Psychometrics.
- therapy : Friedreich Ataxia.
- Adolescent, Adult, Female, Health Status Indicators, Health Surveys, Humans, Male, Middle Aged, Questionnaires, Reproducibility of Results, Sickness Impact Profile.
Abstract
The objective of this study was to examine the psychometric properties of four widely used generic health status measures in Friedreich's ataxia (FA), to determine their suitability as outcome measures. Fifty‐six people with genetically confirmed FA completed the Barthel Index (BI), General Health Questionnaire (GHQ‐12), EuroQol (EQ‐5D), and Medical Outcomes Study 36‐item Short Form Health Survey (SF‐36) by means of postal survey. Six psychometric properties (data quality, scaling assumptions, acceptability, reliability, validity, and responsiveness) were examined. The response rate was 97%. In general, the psychometric properties of the four measures satisfied recommended criteria. However, closer examination highlighted limitations restricting their use for treatment trials. For example, the BI had high levels of missing data, EQ‐5D had poor discriminant ability, and five SF‐36 scales had high floor and/or ceiling effects. Most scale scores did not span the entire scale range, had means that differed notably from the scale mid‐point, and had wide confidence intervals. Effect sizes (ES) were small for all four measures raising questions about their ability to detect clinically significant change. Results highlight the potential limitations of these four scales for evaluating health outcomes in FA and suggest the need for new disease‐specific patient‐based measures of its impact. © 2006 Movement Disorder Society
Url:
DOI: 10.1002/mds.20985
Affiliations:
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Le document en format XML
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Cano</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Neurological Outcomes Measures Unit, Institute of Neurology, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Cooper, J Mark" sort="Cooper, J Mark" uniqKey="Cooper J" first="J. Mark" last="Cooper">J. Mark Cooper</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Department of Clinical Neurosciences, Royal Free and University College Medical School, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Bradley, Jane L" sort="Bradley, Jane L" uniqKey="Bradley J" first="Jane L." last="Bradley">Jane L. Bradley</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Department of Clinical Neurosciences, Royal Free and University College Medical School, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Schapira, Anthony H V" sort="Schapira, Anthony H V" uniqKey="Schapira A" first="Anthony H. V." last="Schapira">Anthony H. V. 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Hobart</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Neurological Outcomes Measures Unit, Institute of Neurology, London</wicri:regionArea><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation><affiliation wicri:level="1"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Department of Clinical Neurosciences, Peninsula Medical School, Plymouth</wicri:regionArea><wicri:noRegion>Plymouth</wicri:noRegion></affiliation></author></analytic><monogr></monogr><series><title level="j">Movement Disorders</title><title level="j" type="sub">Official Journal of the Movement Disorder Society</title><title level="j" type="abbrev">Mov. Disord.</title><idno type="ISSN">0885-3185</idno><idno type="eISSN">1531-8257</idno><imprint><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher><pubPlace>Hoboken</pubPlace><date type="published" when="2006-09">2006-09</date><biblScope unit="vol">21</biblScope><biblScope unit="issue">9</biblScope><biblScope unit="page" from="1396">1396</biblScope><biblScope unit="page" to="1403">1403</biblScope></imprint><idno type="ISSN">0885-3185</idno></series><idno type="istex">30A0EF9E55BF7D4733CB0387420E250873DD1B0B</idno><idno type="DOI">10.1002/mds.20985</idno><idno type="ArticleID">MDS20985</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0885-3185</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Activities of Daily Living (classification)</term><term>Adolescent</term><term>Adult</term><term>Ataxia</term><term>Female</term><term>Friedreich Ataxia (diagnosis)</term><term>Friedreich Ataxia (genetics)</term><term>Friedreich Ataxia (psychology)</term><term>Friedreich Ataxia (therapy)</term><term>Friedreich ataxia</term><term>Friedreich's ataxia (FA)</term><term>Health Status Indicators</term><term>Health Surveys</term><term>Health status</term><term>Human</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Nervous system diseases</term><term>Neurologic Examination (statistics & numerical data)</term><term>Outcome Assessment (Health Care) (statistics & numerical data)</term><term>Prognosis</term><term>Psychometrics</term><term>Psychometrics (statistics & numerical data)</term><term>Quality of Life (psychology)</term><term>Questionnaires</term><term>Reproducibility of Results</term><term>Sickness Impact Profile</term><term>health status measures</term><term>patient‐based outcome measures</term><term>psychometric</term></keywords><keywords scheme="MESH" qualifier="classification" xml:lang="en"><term>Activities of Daily Living</term></keywords><keywords scheme="MESH" qualifier="diagnosis" xml:lang="en"><term>Friedreich Ataxia</term></keywords><keywords scheme="MESH" qualifier="genetics" xml:lang="en"><term>Friedreich Ataxia</term></keywords><keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Friedreich Ataxia</term><term>Quality of Life</term></keywords><keywords scheme="MESH" qualifier="statistics & numerical data" xml:lang="en"><term>Neurologic Examination</term><term>Outcome Assessment (Health Care)</term><term>Psychometrics</term></keywords><keywords scheme="MESH" qualifier="therapy" xml:lang="en"><term>Friedreich Ataxia</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adolescent</term><term>Adult</term><term>Female</term><term>Health Status Indicators</term><term>Health Surveys</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Questionnaires</term><term>Reproducibility of Results</term><term>Sickness Impact Profile</term></keywords><keywords scheme="Pascal" xml:lang="fr"><term>Ataxie</term><term>Etat sanitaire</term><term>Homme</term><term>Hérédodégénérescence spinocérébelleuse Friedreich</term><term>Pronostic</term><term>Psychométrie</term><term>Système nerveux pathologie</term></keywords><keywords scheme="Wicri" type="topic" xml:lang="fr"><term>Homme</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">The objective of this study was to examine the psychometric properties of four widely used generic health status measures in Friedreich's ataxia (FA), to determine their suitability as outcome measures. Fifty‐six people with genetically confirmed FA completed the Barthel Index (BI), General Health Questionnaire (GHQ‐12), EuroQol (EQ‐5D), and Medical Outcomes Study 36‐item Short Form Health Survey (SF‐36) by means of postal survey. Six psychometric properties (data quality, scaling assumptions, acceptability, reliability, validity, and responsiveness) were examined. The response rate was 97%. In general, the psychometric properties of the four measures satisfied recommended criteria. However, closer examination highlighted limitations restricting their use for treatment trials. For example, the BI had high levels of missing data, EQ‐5D had poor discriminant ability, and five SF‐36 scales had high floor and/or ceiling effects. Most scale scores did not span the entire scale range, had means that differed notably from the scale mid‐point, and had wide confidence intervals. Effect sizes (ES) were small for all four measures raising questions about their ability to detect clinically significant change. Results highlight the potential limitations of these four scales for evaluating health outcomes in FA and suggest the need for new disease‐specific patient‐based measures of its impact. © 2006 Movement Disorder Society</div></front></TEI><affiliations><list><country><li>Royaume-Uni</li></country><region><li>Angleterre</li><li>Grand Londres</li></region><settlement><li>Londres</li></settlement><orgName><li>Université de Londres</li></orgName></list><tree><country name="Royaume-Uni"><region name="Angleterre"><name sortKey="Riazi, Afsane" sort="Riazi, Afsane" uniqKey="Riazi A" first="Afsane" last="Riazi">Afsane Riazi</name></region><name sortKey="Bradley, Jane L" sort="Bradley, Jane L" uniqKey="Bradley J" first="Jane L." last="Bradley">Jane L. Bradley</name><name sortKey="Cano, Stefan J" sort="Cano, Stefan J" uniqKey="Cano S" first="Stefan J." last="Cano">Stefan J. Cano</name><name sortKey="Cooper, J Mark" sort="Cooper, J Mark" uniqKey="Cooper J" first="J. Mark" last="Cooper">J. Mark Cooper</name><name sortKey="Hobart, Jeremy C" sort="Hobart, Jeremy C" uniqKey="Hobart J" first="Jeremy C." last="Hobart">Jeremy C. Hobart</name><name sortKey="Hobart, Jeremy C" sort="Hobart, Jeremy C" uniqKey="Hobart J" first="Jeremy C." last="Hobart">Jeremy C. Hobart</name><name sortKey="Riazi, Afsane" sort="Riazi, Afsane" uniqKey="Riazi A" first="Afsane" last="Riazi">Afsane Riazi</name><name sortKey="Schapira, Anthony H V" sort="Schapira, Anthony H V" uniqKey="Schapira A" first="Anthony H. V." last="Schapira">Anthony H. V. Schapira</name></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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