Friedreich's ataxia impact scale: A new measure striving to provide the flexibility required by today's studies
Identifieur interne : 002B62 ( Main/Merge ); précédent : 002B61; suivant : 002B63Friedreich's ataxia impact scale: A new measure striving to provide the flexibility required by today's studies
Auteurs : Stefan J. Cano [Royaume-Uni] ; Afsane Riazi [Royaume-Uni] ; Anthony H. V. Schapira [Royaume-Uni] ; J. Mark Cooper [Royaume-Uni] ; Jeremy C. Hobart [Royaume-Uni]Source :
- Movement Disorders [ 0885-3185 ] ; 2009-05-15.
English descriptors
- KwdEn :
- Adolescent, Adult, Affect, Aged, Aged, 80 and over, Evaluation Studies as Topic, Extremities (physiopathology), Female, Friedreich Ataxia (diagnosis), Friedreich Ataxia (physiopathology), Friedreich's ataxia, Health Status, Health Surveys, Humans, Male, Middle Aged, Movement (physiology), Psychometrics (methods), Questionnaires, Rasch analysis, Severity of Illness Index, Speech (physiology), Young Adult, quality of life, rating scale, reliability, validity.
- MESH :
- diagnosis : Friedreich Ataxia.
- methods : Psychometrics.
- physiology : Movement, Speech.
- physiopathology : Extremities, Friedreich Ataxia.
- Adolescent, Adult, Affect, Aged, Aged, 80 and over, Evaluation Studies as Topic, Female, Health Status, Health Surveys, Humans, Male, Middle Aged, Questionnaires, Severity of Illness Index, Young Adult.
Abstract
To develop, using modern techniques of rating scale construction, a new patient reported rating scale for clinical studies of Friedreich's ataxia (FA) that strives to meet the measurement needs of different types of study. Qualitative research methods were used to generate a conceptual framework of the impact of FA, and a pool of items necessary to construct a subscale for each area identified. This item pool was then administered to 492 people with FA. Rasch measurement methods guided scale construction. Eight areas for measurement were identified (speech, upper limb functioning, lower limb functioning, body movement, complex tasks, isolation, mood, self perceptions), and a 126‐item scale constructed (FA Impact Scale; FAIS). In addition, three shorter versions were developed to illustrate how the FAIS can be adapted for observational studies, more disabled, and less disabled samples of people with FA. The FAIS is a psychometrically sound 126‐item measure from which subsets of items can be selected to meet the needs of different studies. Importantly, all versions can be referred back to the original scale. This study shows one of the many clinical advantages of using Rasch measurement methods to construct rating scales. © 2009 Movement Disorder Society
Url:
DOI: 10.1002/mds.22420
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Cano</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Neurological Outcome Measures Unit, Institute of Neurology, University College London, 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 Neuroscience, Peninsula College of Medicine and Dentistry, Plymouth</wicri:regionArea><wicri:noRegion>Plymouth</wicri:noRegion></affiliation></author><author><name sortKey="Riazi, Afsane" sort="Riazi, Afsane" uniqKey="Riazi A" first="Afsane" last="Riazi">Afsane Riazi</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Neurological Outcome Measures Unit, Institute of Neurology, University College London, 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. 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Mark Cooper</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Department of Clinical Neuroscience, 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="Hobart, Jeremy C" sort="Hobart, Jeremy C" uniqKey="Hobart J" first="Jeremy C." last="Hobart">Jeremy C. Hobart</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Neurological Outcome Measures Unit, Institute of Neurology, University College London, 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 Neuroscience, Peninsula College of Medicine and Dentistry, Plymouth</wicri:regionArea><wicri:noRegion>Plymouth</wicri:noRegion></affiliation></author></analytic><monogr></monogr><series><title level="j">Movement Disorders</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="2009-05-15">2009-05-15</date><biblScope unit="vol">24</biblScope><biblScope unit="issue">7</biblScope><biblScope unit="page" from="984">984</biblScope><biblScope unit="page" to="992">992</biblScope></imprint><idno type="ISSN">0885-3185</idno></series><idno type="istex">63BB8EF6AF3F81B6230F6A25EB58443369A2BFEB</idno><idno type="DOI">10.1002/mds.22420</idno><idno type="ArticleID">MDS22420</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0885-3185</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adolescent</term><term>Adult</term><term>Affect</term><term>Aged</term><term>Aged, 80 and over</term><term>Evaluation Studies as Topic</term><term>Extremities (physiopathology)</term><term>Female</term><term>Friedreich Ataxia (diagnosis)</term><term>Friedreich Ataxia (physiopathology)</term><term>Friedreich's ataxia</term><term>Health Status</term><term>Health Surveys</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Movement (physiology)</term><term>Psychometrics (methods)</term><term>Questionnaires</term><term>Rasch analysis</term><term>Severity of Illness Index</term><term>Speech (physiology)</term><term>Young Adult</term><term>quality of life</term><term>rating scale</term><term>reliability</term><term>validity</term></keywords><keywords scheme="MESH" qualifier="diagnosis" xml:lang="en"><term>Friedreich Ataxia</term></keywords><keywords scheme="MESH" qualifier="methods" xml:lang="en"><term>Psychometrics</term></keywords><keywords scheme="MESH" qualifier="physiology" xml:lang="en"><term>Movement</term><term>Speech</term></keywords><keywords scheme="MESH" qualifier="physiopathology" xml:lang="en"><term>Extremities</term><term>Friedreich Ataxia</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adolescent</term><term>Adult</term><term>Affect</term><term>Aged</term><term>Aged, 80 and over</term><term>Evaluation Studies as Topic</term><term>Female</term><term>Health Status</term><term>Health Surveys</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Questionnaires</term><term>Severity of Illness Index</term><term>Young Adult</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">To develop, using modern techniques of rating scale construction, a new patient reported rating scale for clinical studies of Friedreich's ataxia (FA) that strives to meet the measurement needs of different types of study. Qualitative research methods were used to generate a conceptual framework of the impact of FA, and a pool of items necessary to construct a subscale for each area identified. This item pool was then administered to 492 people with FA. Rasch measurement methods guided scale construction. Eight areas for measurement were identified (speech, upper limb functioning, lower limb functioning, body movement, complex tasks, isolation, mood, self perceptions), and a 126‐item scale constructed (FA Impact Scale; FAIS). In addition, three shorter versions were developed to illustrate how the FAIS can be adapted for observational studies, more disabled, and less disabled samples of people with FA. The FAIS is a psychometrically sound 126‐item measure from which subsets of items can be selected to meet the needs of different studies. Importantly, all versions can be referred back to the original scale. This study shows one of the many clinical advantages of using Rasch measurement methods to construct rating scales. © 2009 Movement Disorder Society</div></front></TEI><double doi="10.1002/mds.22420"><ISTEX><TEI wicri:istexFullTextTei="biblStruct"><teiHeader><fileDesc><titleStmt><title xml:lang="en">Friedreich's ataxia impact scale: A new measure striving to provide the flexibility required by today's studies</title><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="Riazi, Afsane" sort="Riazi, Afsane" uniqKey="Riazi A" first="Afsane" last="Riazi">Afsane Riazi</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="Cooper, J Mark" sort="Cooper, J Mark" uniqKey="Cooper J" first="J. Mark" last="Cooper">J. Mark Cooper</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">ISTEX</idno><idno type="RBID">ISTEX:63BB8EF6AF3F81B6230F6A25EB58443369A2BFEB</idno><date when="2009" year="2009">2009</date><idno type="doi">10.1002/mds.22420</idno><idno type="url">https://api.istex.fr/document/63BB8EF6AF3F81B6230F6A25EB58443369A2BFEB/fulltext/pdf</idno><idno type="wicri:Area/Istex/Corpus">000F96</idno><idno type="wicri:Area/Istex/Curation">000F96</idno><idno type="wicri:Area/Istex/Checkpoint">000F03</idno><idno type="wicri:doubleKey">0885-3185:2009:Cano S:friedreich:s:ataxia</idno></publicationStmt><sourceDesc><biblStruct><analytic><title level="a" type="main" xml:lang="en">Friedreich's ataxia impact scale: A new measure striving to provide the flexibility required by today's studies</title><author><name sortKey="Cano, Stefan J" sort="Cano, Stefan J" uniqKey="Cano S" first="Stefan J." last="Cano">Stefan J. Cano</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Neurological Outcome Measures Unit, Institute of Neurology, University College London, 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 Neuroscience, Peninsula College of Medicine and Dentistry, Plymouth</wicri:regionArea><wicri:noRegion>Plymouth</wicri:noRegion></affiliation></author><author><name sortKey="Riazi, Afsane" sort="Riazi, Afsane" uniqKey="Riazi A" first="Afsane" last="Riazi">Afsane Riazi</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Neurological Outcome Measures Unit, Institute of Neurology, University College London, 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. Schapira</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Department of Clinical Neuroscience, 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="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 Neuroscience, 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="Hobart, Jeremy C" sort="Hobart, Jeremy C" uniqKey="Hobart J" first="Jeremy C." last="Hobart">Jeremy C. Hobart</name><affiliation wicri:level="3"><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Neurological Outcome Measures Unit, Institute of Neurology, University College London, 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 Neuroscience, Peninsula College of Medicine and Dentistry, Plymouth</wicri:regionArea><wicri:noRegion>Plymouth</wicri:noRegion></affiliation></author></analytic><monogr></monogr><series><title level="j">Movement Disorders</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="2009-05-15">2009-05-15</date><biblScope unit="vol">24</biblScope><biblScope unit="issue">7</biblScope><biblScope unit="page" from="984">984</biblScope><biblScope unit="page" to="992">992</biblScope></imprint><idno type="ISSN">0885-3185</idno></series><idno type="istex">63BB8EF6AF3F81B6230F6A25EB58443369A2BFEB</idno><idno type="DOI">10.1002/mds.22420</idno><idno type="ArticleID">MDS22420</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0885-3185</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Friedreich's ataxia</term><term>Rasch analysis</term><term>quality of life</term><term>rating scale</term><term>reliability</term><term>validity</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">To develop, using modern techniques of rating scale construction, a new patient reported rating scale for clinical studies of Friedreich's ataxia (FA) that strives to meet the measurement needs of different types of study. Qualitative research methods were used to generate a conceptual framework of the impact of FA, and a pool of items necessary to construct a subscale for each area identified. This item pool was then administered to 492 people with FA. Rasch measurement methods guided scale construction. Eight areas for measurement were identified (speech, upper limb functioning, lower limb functioning, body movement, complex tasks, isolation, mood, self perceptions), and a 126‐item scale constructed (FA Impact Scale; FAIS). In addition, three shorter versions were developed to illustrate how the FAIS can be adapted for observational studies, more disabled, and less disabled samples of people with FA. The FAIS is a psychometrically sound 126‐item measure from which subsets of items can be selected to meet the needs of different studies. Importantly, all versions can be referred back to the original scale. This study shows one of the many clinical advantages of using Rasch measurement methods to construct rating scales. © 2009 Movement Disorder Society</div></front></TEI></ISTEX><PubMed><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Friedreich's ataxia impact scale: a new measure striving to provide the flexibility required by today's studies.</title><author><name sortKey="Cano, Stefan J" sort="Cano, Stefan J" uniqKey="Cano S" first="Stefan J" last="Cano">Stefan J. Cano</name><affiliation wicri:level="3"><nlm:affiliation>Neurological Outcome Measures Unit, Institute of Neurology, University College London, London, United Kingdom.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Neurological Outcome Measures Unit, Institute of Neurology, University College London, 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="Riazi, Afsane" sort="Riazi, Afsane" uniqKey="Riazi A" first="Afsane" last="Riazi">Afsane Riazi</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="Cooper, J Mark" sort="Cooper, J Mark" uniqKey="Cooper J" first="J Mark" last="Cooper">J Mark Cooper</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="2009">2009</date><idno type="doi">10.1002/mds.22420</idno><idno type="RBID">pubmed:19224613</idno><idno type="pmid">19224613</idno><idno type="wicri:Area/PubMed/Corpus">001E13</idno><idno type="wicri:Area/PubMed/Curation">001E13</idno><idno type="wicri:Area/PubMed/Checkpoint">001E06</idno><idno type="wicri:Area/Ncbi/Merge">002564</idno><idno type="wicri:Area/Ncbi/Curation">002564</idno><idno type="wicri:Area/Ncbi/Checkpoint">002564</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Friedreich's ataxia impact scale: a new measure striving to provide the flexibility required by today's studies.</title><author><name sortKey="Cano, Stefan J" sort="Cano, Stefan J" uniqKey="Cano S" first="Stefan J" last="Cano">Stefan J. Cano</name><affiliation wicri:level="3"><nlm:affiliation>Neurological Outcome Measures Unit, Institute of Neurology, University College London, London, United Kingdom.</nlm:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Neurological Outcome Measures Unit, Institute of Neurology, University College London, 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="Riazi, Afsane" sort="Riazi, Afsane" uniqKey="Riazi A" first="Afsane" last="Riazi">Afsane Riazi</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="Cooper, J Mark" sort="Cooper, J Mark" uniqKey="Cooper J" first="J Mark" last="Cooper">J Mark Cooper</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="eISSN">1531-8257</idno><imprint><date when="2009" type="published">2009</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adolescent</term><term>Adult</term><term>Affect</term><term>Aged</term><term>Aged, 80 and over</term><term>Evaluation Studies as Topic</term><term>Extremities (physiopathology)</term><term>Female</term><term>Friedreich Ataxia (diagnosis)</term><term>Friedreich Ataxia (physiopathology)</term><term>Health Status</term><term>Health Surveys</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Movement (physiology)</term><term>Psychometrics (methods)</term><term>Questionnaires</term><term>Severity of Illness Index</term><term>Speech (physiology)</term><term>Young Adult</term></keywords><keywords scheme="MESH" qualifier="diagnosis" xml:lang="en"><term>Friedreich Ataxia</term></keywords><keywords scheme="MESH" qualifier="methods" xml:lang="en"><term>Psychometrics</term></keywords><keywords scheme="MESH" qualifier="physiology" xml:lang="en"><term>Movement</term><term>Speech</term></keywords><keywords scheme="MESH" qualifier="physiopathology" xml:lang="en"><term>Extremities</term><term>Friedreich Ataxia</term></keywords><keywords scheme="MESH" xml:lang="en"><term>Adolescent</term><term>Adult</term><term>Affect</term><term>Aged</term><term>Aged, 80 and over</term><term>Evaluation Studies as Topic</term><term>Female</term><term>Health Status</term><term>Health Surveys</term><term>Humans</term><term>Male</term><term>Middle Aged</term><term>Questionnaires</term><term>Severity of Illness Index</term><term>Young Adult</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">To develop, using modern techniques of rating scale construction, a new patient reported rating scale for clinical studies of Friedreich's ataxia (FA) that strives to meet the measurement needs of different types of study. Qualitative research methods were used to generate a conceptual framework of the impact of FA, and a pool of items necessary to construct a subscale for each area identified. This item pool was then administered to 492 people with FA. Rasch measurement methods guided scale construction. Eight areas for measurement were identified (speech, upper limb functioning, lower limb functioning, body movement, complex tasks, isolation, mood, self perceptions), and a 126-item scale constructed (FA Impact Scale; FAIS). In addition, three shorter versions were developed to illustrate how the FAIS can be adapted for observational studies, more disabled, and less disabled samples of people with FA. The FAIS is a psychometrically sound 126-item measure from which subsets of items can be selected to meet the needs of different studies. Importantly, all versions can be referred back to the original scale. This study shows one of the many clinical advantages of using Rasch measurement methods to construct rating scales.</div></front></TEI></PubMed></double></record>Pour manipuler ce document sous Unix (Dilib)
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