Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease
Purpose To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT). Methods A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recrui...
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| Veröffentlicht in: | Quality of life research 2015-11, Vol.24 (11), p.2615-2623 |
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| creator | Dany, Antoine Barbe, Coralie Rapin, Amandine Réveillère, Christian Hardouin, Jean-Benoit Morrone, Isabella Wolak-Thierry, Aurore Dramé, Moustapha Calmus, Arnaud Sacconi, Sabrina Bassez, Guillaume Tiffreau, Vincent Richard, Isabelle Gallais, Benjamin Prigent, Hélène Taiar, Redha Jolly, Damien Novella, Jean-Luc Boyer, François Constant |
| description | Purpose To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT). Methods A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recruited in eight NMD referral centers. Exploratory statistical analysis included methods derived from both IRT and classical test theory. Results We constructed a questionnaire named QoL-NMD which is composed of two general items and 24 items classified in three domains: (1) "Impact of Physical Symptoms," (2) "Self-perception" and (3) "Activities and Social Participation." Each domain has good psychometric properties (Cronbach's alpha > 0.77, test-retest ICC > 0.81, Loevinger's H > 0.41) and meets IRT assumptions. Comparison with the WHOQOL-BREF enabled assessing similarities and discrepancies with a generic questionnaire. Conclusion This study enabled the development of a new HRQL questionnaire specifically designed for slowly progressive NMD patients. The QoL-NMD is short enough to be used in clinical practice (26 items). The next steps will be to validate QoL-NMD by re-assessing psychometrics in an independent sample of patients and calibrate the IRT scoring system. |
| doi_str_mv | 10.1007/s11136-015-1013-8 |
| format | Article |
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Methods A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recruited in eight NMD referral centers. Exploratory statistical analysis included methods derived from both IRT and classical test theory. Results We constructed a questionnaire named QoL-NMD which is composed of two general items and 24 items classified in three domains: (1) "Impact of Physical Symptoms," (2) "Self-perception" and (3) "Activities and Social Participation." Each domain has good psychometric properties (Cronbach's alpha > 0.77, test-retest ICC > 0.81, Loevinger's H > 0.41) and meets IRT assumptions. Comparison with the WHOQOL-BREF enabled assessing similarities and discrepancies with a generic questionnaire. Conclusion This study enabled the development of a new HRQL questionnaire specifically designed for slowly progressive NMD patients. The QoL-NMD is short enough to be used in clinical practice (26 items). The next steps will be to validate QoL-NMD by re-assessing psychometrics in an independent sample of patients and calibrate the IRT scoring system.</description><identifier>ISSN: 0962-9343</identifier><identifier>EISSN: 1573-2649</identifier><identifier>DOI: 10.1007/s11136-015-1013-8</identifier><identifier>PMID: 26141500</identifier><language>eng</language><publisher>Cham: Springer</publisher><subject>Activities of daily living ; Adult ; Aged ; Classical test theory ; Cronbach's alpha ; Disease ; Disease Progression ; Female ; Health Status ; Hospitals ; Humanities and Social Sciences ; Humans ; INSTRUMENT DEVELOPMENT ; Item response theory ; Male ; Medicine ; Medicine & Public Health ; Middle Aged ; Neuromuscular diseases ; Neuromuscular Diseases - psychology ; Patients ; Principal components analysis ; Psychology ; Psychometrics ; Public Health ; Quality of life ; Quality of Life - psychology ; Quality of Life Research ; Quantitative psychology ; Questionnaires ; Self Concept ; Self image ; Sociology ; Statistical methods ; Surveys and Questionnaires</subject><ispartof>Quality of life research, 2015-11, Vol.24 (11), p.2615-2623</ispartof><rights>Springer International Publishing 2015</rights><rights>Springer International Publishing Switzerland 2015</rights><rights>Distributed under a Creative Commons Attribution 4.0 International License</rights><lds50>peer_reviewed</lds50><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c527t-b70d5afdc2376290ec268f42050f12f5ff68fa3f407c30414308ca81492425ae3</citedby><cites>FETCH-LOGICAL-c527t-b70d5afdc2376290ec268f42050f12f5ff68fa3f407c30414308ca81492425ae3</cites><orcidid>0000-0002-8005-023X ; 0000-0002-3653-6160 ; 0000-0002-6662-8832 ; 0000-0002-7074-7500 ; 0000-0001-5101-9738 ; 0000-0001-8664-623X ; 0000-0002-2044-1052</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.jstor.org/stable/pdf/44849364$$EPDF$$P50$$Gjstor$$H</linktopdf><linktohtml>$$Uhttps://www.jstor.org/stable/44849364$$EHTML$$P50$$Gjstor$$H</linktohtml><link.rule.ids>230,314,776,780,799,881,27901,27902,41464,42533,51294,57992,58225</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/26141500$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink><backlink>$$Uhttps://univ-tours.hal.science/hal-02472944$$DView record in HAL$$Hfree_for_read</backlink></links><search><creatorcontrib>Dany, Antoine</creatorcontrib><creatorcontrib>Barbe, Coralie</creatorcontrib><creatorcontrib>Rapin, Amandine</creatorcontrib><creatorcontrib>Réveillère, Christian</creatorcontrib><creatorcontrib>Hardouin, Jean-Benoit</creatorcontrib><creatorcontrib>Morrone, Isabella</creatorcontrib><creatorcontrib>Wolak-Thierry, Aurore</creatorcontrib><creatorcontrib>Dramé, Moustapha</creatorcontrib><creatorcontrib>Calmus, Arnaud</creatorcontrib><creatorcontrib>Sacconi, Sabrina</creatorcontrib><creatorcontrib>Bassez, Guillaume</creatorcontrib><creatorcontrib>Tiffreau, Vincent</creatorcontrib><creatorcontrib>Richard, Isabelle</creatorcontrib><creatorcontrib>Gallais, Benjamin</creatorcontrib><creatorcontrib>Prigent, Hélène</creatorcontrib><creatorcontrib>Taiar, Redha</creatorcontrib><creatorcontrib>Jolly, Damien</creatorcontrib><creatorcontrib>Novella, Jean-Luc</creatorcontrib><creatorcontrib>Boyer, François Constant</creatorcontrib><title>Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease</title><title>Quality of life research</title><addtitle>Qual Life Res</addtitle><addtitle>Qual Life Res</addtitle><description>Purpose To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT). Methods A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recruited in eight NMD referral centers. Exploratory statistical analysis included methods derived from both IRT and classical test theory. Results We constructed a questionnaire named QoL-NMD which is composed of two general items and 24 items classified in three domains: (1) "Impact of Physical Symptoms," (2) "Self-perception" and (3) "Activities and Social Participation." Each domain has good psychometric properties (Cronbach's alpha > 0.77, test-retest ICC > 0.81, Loevinger's H > 0.41) and meets IRT assumptions. Comparison with the WHOQOL-BREF enabled assessing similarities and discrepancies with a generic questionnaire. Conclusion This study enabled the development of a new HRQL questionnaire specifically designed for slowly progressive NMD patients. The QoL-NMD is short enough to be used in clinical practice (26 items). The next steps will be to validate QoL-NMD by re-assessing psychometrics in an independent sample of patients and calibrate the IRT scoring system.</description><subject>Activities of daily living</subject><subject>Adult</subject><subject>Aged</subject><subject>Classical test theory</subject><subject>Cronbach's alpha</subject><subject>Disease</subject><subject>Disease Progression</subject><subject>Female</subject><subject>Health Status</subject><subject>Hospitals</subject><subject>Humanities and Social Sciences</subject><subject>Humans</subject><subject>INSTRUMENT DEVELOPMENT</subject><subject>Item response theory</subject><subject>Male</subject><subject>Medicine</subject><subject>Medicine & Public Health</subject><subject>Middle Aged</subject><subject>Neuromuscular diseases</subject><subject>Neuromuscular Diseases - psychology</subject><subject>Patients</subject><subject>Principal components analysis</subject><subject>Psychology</subject><subject>Psychometrics</subject><subject>Public Health</subject><subject>Quality of life</subject><subject>Quality of Life - psychology</subject><subject>Quality of Life Research</subject><subject>Quantitative psychology</subject><subject>Questionnaires</subject><subject>Self Concept</subject><subject>Self image</subject><subject>Sociology</subject><subject>Statistical methods</subject><subject>Surveys and Questionnaires</subject><issn>0962-9343</issn><issn>1573-2649</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2015</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><sourceid>BENPR</sourceid><recordid>eNqNkU9rFEEQxRsxmDX6ATwoA170MLGq_88xLGqEhRDQm9B0ertjL7PTsXsmYb-9PUxcxIN4al7Xr15V8Qh5hXCOAOpDQUQmW0DRIiBr9ROyQqFYSyXvnpIVdJK2HePslDwvZQcAugP6jJxSiRwFwIp8X6ehjHlyY0xDk0Jjm-vJ9nE8zGITg6_al7k62Jh9E1JuSp8e-kNzl9Nt9qXEe98MfsppPxU39TY321i8Lf4FOQm2L_7l43tGvn36-HV92W6uPn9ZX2xaJ6ga2xsFW2HD1lGmJO3AOyp14BQEBKRBhFClZYGDcgw4cgbaWY28o5wK69kZeb_4_rC9uctxb_PBJBvN5cXGzH9AuaId5_dY2XcLW7f_OV9m9rE43_d28GkqBpXUQmom4D9Q7DilWrCKvv0L3aUpD_XohZKqnlYpXCiXUynZh-OyCGZO1CyJmpqomRM1uva8eXSebvZ-e-z4HWEF6AKUWhpuff5j9D9cXy9NuzKmfDTlXPOOSc5-AdLqsyg</recordid><startdate>20151101</startdate><enddate>20151101</enddate><creator>Dany, Antoine</creator><creator>Barbe, Coralie</creator><creator>Rapin, Amandine</creator><creator>Réveillère, Christian</creator><creator>Hardouin, Jean-Benoit</creator><creator>Morrone, Isabella</creator><creator>Wolak-Thierry, Aurore</creator><creator>Dramé, Moustapha</creator><creator>Calmus, Arnaud</creator><creator>Sacconi, Sabrina</creator><creator>Bassez, Guillaume</creator><creator>Tiffreau, Vincent</creator><creator>Richard, Isabelle</creator><creator>Gallais, Benjamin</creator><creator>Prigent, Hélène</creator><creator>Taiar, Redha</creator><creator>Jolly, Damien</creator><creator>Novella, Jean-Luc</creator><creator>Boyer, François Constant</creator><general>Springer</general><general>Springer International Publishing</general><general>Springer Nature B.V</general><general>Springer Verlag</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>3V.</scope><scope>7RV</scope><scope>7WY</scope><scope>7WZ</scope><scope>7X7</scope><scope>7XB</scope><scope>87Z</scope><scope>88E</scope><scope>88G</scope><scope>8AO</scope><scope>8C1</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>8FL</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>BEZIV</scope><scope>CCPQU</scope><scope>DWQXO</scope><scope>FRNLG</scope><scope>FYUFA</scope><scope>F~G</scope><scope>GHDGH</scope><scope>GNUQQ</scope><scope>K60</scope><scope>K6~</scope><scope>K9.</scope><scope>KB0</scope><scope>L.-</scope><scope>M0C</scope><scope>M0S</scope><scope>M1P</scope><scope>M2M</scope><scope>NAPCQ</scope><scope>PQBIZ</scope><scope>PQBZA</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PSYQQ</scope><scope>Q9U</scope><scope>7X8</scope><scope>7TK</scope><scope>1XC</scope><scope>BXJBU</scope><orcidid>https://orcid.org/0000-0002-8005-023X</orcidid><orcidid>https://orcid.org/0000-0002-3653-6160</orcidid><orcidid>https://orcid.org/0000-0002-6662-8832</orcidid><orcidid>https://orcid.org/0000-0002-7074-7500</orcidid><orcidid>https://orcid.org/0000-0001-5101-9738</orcidid><orcidid>https://orcid.org/0000-0001-8664-623X</orcidid><orcidid>https://orcid.org/0000-0002-2044-1052</orcidid></search><sort><creationdate>20151101</creationdate><title>Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease</title><author>Dany, Antoine ; Barbe, Coralie ; Rapin, Amandine ; Réveillère, Christian ; Hardouin, Jean-Benoit ; Morrone, Isabella ; Wolak-Thierry, Aurore ; Dramé, Moustapha ; Calmus, Arnaud ; Sacconi, Sabrina ; Bassez, Guillaume ; Tiffreau, Vincent ; Richard, Isabelle ; Gallais, Benjamin ; Prigent, Hélène ; Taiar, Redha ; Jolly, Damien ; Novella, Jean-Luc ; Boyer, François Constant</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c527t-b70d5afdc2376290ec268f42050f12f5ff68fa3f407c30414308ca81492425ae3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2015</creationdate><topic>Activities of daily living</topic><topic>Adult</topic><topic>Aged</topic><topic>Classical test theory</topic><topic>Cronbach's alpha</topic><topic>Disease</topic><topic>Disease Progression</topic><topic>Female</topic><topic>Health Status</topic><topic>Hospitals</topic><topic>Humanities and Social Sciences</topic><topic>Humans</topic><topic>INSTRUMENT DEVELOPMENT</topic><topic>Item response theory</topic><topic>Male</topic><topic>Medicine</topic><topic>Medicine & Public Health</topic><topic>Middle Aged</topic><topic>Neuromuscular diseases</topic><topic>Neuromuscular Diseases - psychology</topic><topic>Patients</topic><topic>Principal components analysis</topic><topic>Psychology</topic><topic>Psychometrics</topic><topic>Public Health</topic><topic>Quality of life</topic><topic>Quality of Life - psychology</topic><topic>Quality of Life Research</topic><topic>Quantitative psychology</topic><topic>Questionnaires</topic><topic>Self Concept</topic><topic>Self image</topic><topic>Sociology</topic><topic>Statistical methods</topic><topic>Surveys and Questionnaires</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Dany, Antoine</creatorcontrib><creatorcontrib>Barbe, Coralie</creatorcontrib><creatorcontrib>Rapin, Amandine</creatorcontrib><creatorcontrib>Réveillère, Christian</creatorcontrib><creatorcontrib>Hardouin, Jean-Benoit</creatorcontrib><creatorcontrib>Morrone, Isabella</creatorcontrib><creatorcontrib>Wolak-Thierry, Aurore</creatorcontrib><creatorcontrib>Dramé, Moustapha</creatorcontrib><creatorcontrib>Calmus, Arnaud</creatorcontrib><creatorcontrib>Sacconi, Sabrina</creatorcontrib><creatorcontrib>Bassez, Guillaume</creatorcontrib><creatorcontrib>Tiffreau, Vincent</creatorcontrib><creatorcontrib>Richard, Isabelle</creatorcontrib><creatorcontrib>Gallais, Benjamin</creatorcontrib><creatorcontrib>Prigent, Hélène</creatorcontrib><creatorcontrib>Taiar, Redha</creatorcontrib><creatorcontrib>Jolly, Damien</creatorcontrib><creatorcontrib>Novella, Jean-Luc</creatorcontrib><creatorcontrib>Boyer, François Constant</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Central (Corporate)</collection><collection>Proquest Nursing & Allied Health Source</collection><collection>ABI/INFORM Collection</collection><collection>ABI/INFORM Global (PDF only)</collection><collection>Health & Medical Collection</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>ABI/INFORM Global (Alumni Edition)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Psychology Database (Alumni)</collection><collection>ProQuest Pharma Collection</collection><collection>Public Health Database</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ABI/INFORM Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni Edition)</collection><collection>ProQuest Central UK/Ireland</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>Business Premium Collection</collection><collection>ProQuest One Community College</collection><collection>ProQuest Central Korea</collection><collection>Business Premium Collection (Alumni)</collection><collection>Health Research Premium Collection</collection><collection>ABI/INFORM Global (Corporate)</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>ProQuest Central Student</collection><collection>ProQuest Business Collection (Alumni Edition)</collection><collection>ProQuest Business Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>ABI/INFORM Professional Advanced</collection><collection>ABI/INFORM Global</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest Psychology</collection><collection>Nursing & Allied Health Premium</collection><collection>One Business (ProQuest)</collection><collection>ProQuest One Business (Alumni)</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest One Psychology</collection><collection>ProQuest Central Basic</collection><collection>MEDLINE - Academic</collection><collection>Neurosciences Abstracts</collection><collection>Hyper Article en Ligne (HAL)</collection><collection>HAL-SHS: Archive ouverte en Sciences de l'Homme et de la Société</collection><jtitle>Quality of life research</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Dany, Antoine</au><au>Barbe, Coralie</au><au>Rapin, Amandine</au><au>Réveillère, Christian</au><au>Hardouin, Jean-Benoit</au><au>Morrone, Isabella</au><au>Wolak-Thierry, Aurore</au><au>Dramé, Moustapha</au><au>Calmus, Arnaud</au><au>Sacconi, Sabrina</au><au>Bassez, Guillaume</au><au>Tiffreau, Vincent</au><au>Richard, Isabelle</au><au>Gallais, Benjamin</au><au>Prigent, Hélène</au><au>Taiar, Redha</au><au>Jolly, Damien</au><au>Novella, Jean-Luc</au><au>Boyer, François Constant</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease</atitle><jtitle>Quality of life research</jtitle><stitle>Qual Life Res</stitle><addtitle>Qual Life Res</addtitle><date>2015-11-01</date><risdate>2015</risdate><volume>24</volume><issue>11</issue><spage>2615</spage><epage>2623</epage><pages>2615-2623</pages><issn>0962-9343</issn><eissn>1573-2649</eissn><abstract>Purpose To build a questionnaire to assess health-related quality of life (HRQL) in patients suffering from slowly progressive neuromuscular disease (NMD) using item response theory (IRT). Methods A pool of 64 items and a validated questionnaire (WHOQOL-BREF) were administered to 159 patients recruited in eight NMD referral centers. Exploratory statistical analysis included methods derived from both IRT and classical test theory. Results We constructed a questionnaire named QoL-NMD which is composed of two general items and 24 items classified in three domains: (1) "Impact of Physical Symptoms," (2) "Self-perception" and (3) "Activities and Social Participation." Each domain has good psychometric properties (Cronbach's alpha > 0.77, test-retest ICC > 0.81, Loevinger's H > 0.41) and meets IRT assumptions. Comparison with the WHOQOL-BREF enabled assessing similarities and discrepancies with a generic questionnaire. Conclusion This study enabled the development of a new HRQL questionnaire specifically designed for slowly progressive NMD patients. The QoL-NMD is short enough to be used in clinical practice (26 items). The next steps will be to validate QoL-NMD by re-assessing psychometrics in an independent sample of patients and calibrate the IRT scoring system.</abstract><cop>Cham</cop><pub>Springer</pub><pmid>26141500</pmid><doi>10.1007/s11136-015-1013-8</doi><tpages>9</tpages><orcidid>https://orcid.org/0000-0002-8005-023X</orcidid><orcidid>https://orcid.org/0000-0002-3653-6160</orcidid><orcidid>https://orcid.org/0000-0002-6662-8832</orcidid><orcidid>https://orcid.org/0000-0002-7074-7500</orcidid><orcidid>https://orcid.org/0000-0001-5101-9738</orcidid><orcidid>https://orcid.org/0000-0001-8664-623X</orcidid><orcidid>https://orcid.org/0000-0002-2044-1052</orcidid></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0962-9343 |
| ispartof | Quality of life research, 2015-11, Vol.24 (11), p.2615-2623 |
| issn | 0962-9343 1573-2649 |
| language | eng |
| recordid | cdi_hal_primary_oai_HAL_hal_02472944v1 |
| source | Jstor Complete Legacy; MEDLINE; Springer Nature - Complete Springer Journals |
| subjects | Activities of daily living Adult Aged Classical test theory Cronbach's alpha Disease Disease Progression Female Health Status Hospitals Humanities and Social Sciences Humans INSTRUMENT DEVELOPMENT Item response theory Male Medicine Medicine & Public Health Middle Aged Neuromuscular diseases Neuromuscular Diseases - psychology Patients Principal components analysis Psychology Psychometrics Public Health Quality of life Quality of Life - psychology Quality of Life Research Quantitative psychology Questionnaires Self Concept Self image Sociology Statistical methods Surveys and Questionnaires |
| title | Construction of a Quality of Life Questionnaire for slowly progressive neuromuscular disease |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-02-01T02%3A44%3A28IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-jstor_hal_p&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=Construction%20of%20a%20Quality%20of%20Life%20Questionnaire%20for%20slowly%20progressive%20neuromuscular%20disease&rft.jtitle=Quality%20of%20life%20research&rft.au=Dany,%20Antoine&rft.date=2015-11-01&rft.volume=24&rft.issue=11&rft.spage=2615&rft.epage=2623&rft.pages=2615-2623&rft.issn=0962-9343&rft.eissn=1573-2649&rft_id=info:doi/10.1007/s11136-015-1013-8&rft_dat=%3Cjstor_hal_p%3E44849364%3C/jstor_hal_p%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=1719467376&rft_id=info:pmid/26141500&rft_jstor_id=44849364&rfr_iscdi=true |