Coordinating outcomes measurement in ataxia research: do some widely used generic rating scales tick the boxes?
Identifieur interne : 001721 ( Ncbi/Curation ); précédent : 001720; suivant : 001722Coordinating outcomes measurement in ataxia research: do some widely used generic rating scales tick the boxes?
Auteurs : Afsane Riazi [Royaume-Uni] ; Stefan J. Cano ; J Mark Cooper ; Jane L. Bradley ; Anthony H V. Schapira ; Jeremy C. HobartSource :
- Movement disorders : official journal of the Movement Disorder Society [ 0885-3185 ] ; 2006.
English descriptors
- KwdEn :
- Activities of Daily Living (classification), Adolescent, Adult, Female, Friedreich Ataxia (diagnosis), Friedreich Ataxia (genetics), Friedreich Ataxia (psychology), Friedreich Ataxia (therapy), Health Status Indicators, Health Surveys, Humans, Male, Middle Aged, Neurologic Examination (statistics & numerical data), Outcome Assessment (Health Care) (statistics & numerical data), Psychometrics (statistics & numerical data), Quality of Life (psychology), Questionnaires, Reproducibility of Results, Sickness Impact Profile.
- 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.
DOI: 10.1002/mds.20985
PubMed: 16755585
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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Coordinating outcomes measurement in ataxia research: do some widely used generic rating scales tick the boxes?</title><author><name sortKey="Riazi, Afsane" sort="Riazi, Afsane" uniqKey="Riazi A" first="Afsane" last="Riazi">Afsane Riazi</name><affiliation wicri:level="3"><nlm:affiliation>Neurological Outcomes Measures Unit, Institute of Neurology, London, United Kingdom.</nlm:affiliation><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="Cano, Stefan J" sort="Cano, Stefan J" uniqKey="Cano S" first="Stefan J" last="Cano">Stefan J. Cano</name></author><author><name sortKey="Cooper, J Mark" sort="Cooper, J Mark" uniqKey="Cooper J" first="J Mark" last="Cooper">J Mark Cooper</name></author><author><name sortKey="Bradley, Jane L" sort="Bradley, Jane L" uniqKey="Bradley J" first="Jane L" last="Bradley">Jane L. Bradley</name></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. Schapira</name></author><author><name sortKey="Hobart, Jeremy C" sort="Hobart, Jeremy C" uniqKey="Hobart J" first="Jeremy C" last="Hobart">Jeremy C. Hobart</name></author></titleStmt><publicationStmt><idno type="wicri:source">PubMed</idno><date when="2006">2006</date><idno type="doi">10.1002/mds.20985</idno><idno type="RBID">pubmed:16755585</idno><idno type="pmid">16755585</idno><idno type="wicri:Area/PubMed/Corpus">002C13</idno><idno type="wicri:Area/PubMed/Curation">002C13</idno><idno type="wicri:Area/PubMed/Checkpoint">002E00</idno><idno type="wicri:Area/Ncbi/Merge">001721</idno><idno type="wicri:Area/Ncbi/Curation">001721</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Coordinating outcomes measurement in ataxia research: do some widely used generic rating scales tick the boxes?</title><author><name sortKey="Riazi, Afsane" sort="Riazi, Afsane" uniqKey="Riazi A" first="Afsane" last="Riazi">Afsane Riazi</name><affiliation wicri:level="3"><nlm:affiliation>Neurological Outcomes Measures Unit, Institute of Neurology, London, United Kingdom.</nlm:affiliation><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="Cano, Stefan J" sort="Cano, Stefan J" uniqKey="Cano S" first="Stefan J" last="Cano">Stefan J. Cano</name></author><author><name sortKey="Cooper, J Mark" sort="Cooper, J Mark" uniqKey="Cooper J" first="J Mark" last="Cooper">J Mark Cooper</name></author><author><name sortKey="Bradley, Jane L" sort="Bradley, Jane L" uniqKey="Bradley J" first="Jane L" last="Bradley">Jane L. Bradley</name></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. Schapira</name></author><author><name sortKey="Hobart, Jeremy C" sort="Hobart, Jeremy C" uniqKey="Hobart J" first="Jeremy C" last="Hobart">Jeremy C. Hobart</name></author></analytic><series><title level="j">Movement disorders : official journal of the Movement Disorder Society</title><idno type="ISSN">0885-3185</idno><imprint><date when="2006" type="published">2006</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Activities of Daily Living (classification)</term><term>Adolescent</term><term>Adult</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>Health Status Indicators</term><term>Health Surveys</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Neurologic Examination (statistics & numerical data)</term><term>Outcome Assessment (Health Care) (statistics & numerical data)</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></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></textClass></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.</div></front></TEI></record>Pour manipuler ce document sous Unix (Dilib)
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