Health related quality of life in people with hereditary neuromuscular diseases: An investigation of test–retest agreement with comparison between two generic questionnaires, the Nottingham health profile and the short form-36 items
The present work attempts to define reproducibility, test–retest and internal consistencies of two standardised tools that measure health related quality of life (HRQoL), specifically as they apply to hereditary neuromuscular disease (HNMD): the Nottingham health profile (NHP) and the medical outcom...
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| Veröffentlicht in: | Neuromuscular disorders : NMD 2006-02, Vol.16 (2), p.99-106 |
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| container_title | Neuromuscular disorders : NMD |
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| creator | Boyer, F. Morrone, I. Laffont, I. Dizien, O. Etienne, J.C. Novella, J.L. |
| description | The present work attempts to define reproducibility, test–retest and internal consistencies of two standardised tools that measure health related quality of life (HRQoL), specifically as they apply to hereditary neuromuscular disease (HNMD): the Nottingham health profile (NHP) and the medical outcome study 36-item short-form questionnaire (MOS SF-36). A cross sectional survey of 108 hereditary neuromuscular disease patients completed the questionnaires consecutively in the course of multidisciplinary consultations in Reims between April 2002 and February 2005. The results of the study confirm the acceptability of using generic questionnaires such as the Nottingham health profile and the SF-36, and show good reliability for these instruments. For both instruments, reproducibility (test–retest) appears excellent for the physical dimensions explored, and satisfactory for the mental dimensions. There is nonetheless a need for health related quality of life measures validated for neuromuscular disease patients. Health related quality-of-life (HRQoL) measures provide information on how patients assess their health and the care provision they are offered. |
| doi_str_mv | 10.1016/j.nmd.2005.11.002 |
| format | Article |
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A cross sectional survey of 108 hereditary neuromuscular disease patients completed the questionnaires consecutively in the course of multidisciplinary consultations in Reims between April 2002 and February 2005. The results of the study confirm the acceptability of using generic questionnaires such as the Nottingham health profile and the SF-36, and show good reliability for these instruments. For both instruments, reproducibility (test–retest) appears excellent for the physical dimensions explored, and satisfactory for the mental dimensions. There is nonetheless a need for health related quality of life measures validated for neuromuscular disease patients. 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A cross sectional survey of 108 hereditary neuromuscular disease patients completed the questionnaires consecutively in the course of multidisciplinary consultations in Reims between April 2002 and February 2005. The results of the study confirm the acceptability of using generic questionnaires such as the Nottingham health profile and the SF-36, and show good reliability for these instruments. For both instruments, reproducibility (test–retest) appears excellent for the physical dimensions explored, and satisfactory for the mental dimensions. There is nonetheless a need for health related quality of life measures validated for neuromuscular disease patients. Health related quality-of-life (HRQoL) measures provide information on how patients assess their health and the care provision they are offered.</description><subject>Adolescent</subject><subject>Adult</subject><subject>Aged</subject><subject>Cross-Sectional Studies</subject><subject>Data Interpretation, Statistical</subject><subject>Female</subject><subject>France</subject><subject>Humans</subject><subject>Male</subject><subject>Middle Aged</subject><subject>Muscular dystrophies</subject><subject>Neuromuscular diseases</subject><subject>Neuromuscular Diseases - genetics</subject><subject>Neuromuscular Diseases - physiopathology</subject><subject>Neuromuscular Diseases - psychology</subject><subject>Outcome Assessment (Health Care)</subject><subject>Psychometrics - instrumentation</subject><subject>Quality of Life</subject><subject>Questionnaires</subject><subject>Reproducibility of Results</subject><subject>Sickness Impact Profile</subject><subject>Surveys and Questionnaires - standards</subject><issn>0960-8966</issn><issn>1873-2364</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2006</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp9kUGP1CAYhhujcWdXf4AXw8mTrUBb2upps1HXZKMXPRMKH1MmBUagO9mb_8F_6NFfsXRmEm-egPB8bx54i-IVwRXBhL3bVc6qimLcVoRUGNMnxYb0XV3SmjVPiw0eGC77gbGL4jLGHcak7Vj3vLggrKEd7ZtN8fcWxJwmFGAWCRT6uYjZpAfkNZqNBmQc2oPfz4AOJmMTBFAmifCAHCzB2yXKZRYBKRNBRIjv0bXLQ_cQk9mKZLxbo1I-_vn1O8C6QWIbACy4dMqU3u5FMDGjI6QDgEPp4NEWHAQjs9Ga5Z0TJkB8i9IE6KtPybjtJGw2Ovrvg9cmWwqnjkScfEhI-2DLmiGTwMYXxTMt5ggvz-tV8ePTx-83t-Xdt89fbq7vSlm3JJWtFIr2bY_7UbZ93QtF2KikVKytoWG0HjCVnW4k1YMaGM13w6garXU_1nIc6qvizSk3Ox3luTVRwjwLB36JnHWsYc1AMkhOoAw-xgCa74Ox-W85wXwtmO94LpivBXNCeC44z7w-hy-jBfVv4txoBj6cAMhPvDcQeJQGnMy1BZCJK2_-E_8IMz6_ng</recordid><startdate>20060201</startdate><enddate>20060201</enddate><creator>Boyer, F.</creator><creator>Morrone, I.</creator><creator>Laffont, I.</creator><creator>Dizien, O.</creator><creator>Etienne, J.C.</creator><creator>Novella, J.L.</creator><general>Elsevier B.V</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>7X8</scope></search><sort><creationdate>20060201</creationdate><title>Health related quality of life in people with hereditary neuromuscular diseases: An investigation of test–retest agreement with comparison between two generic questionnaires, the Nottingham health profile and the short form-36 items</title><author>Boyer, F. ; Morrone, I. ; Laffont, I. ; Dizien, O. ; Etienne, J.C. ; Novella, J.L.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c351t-5cad285808bc5838ad16bdccd653e4623902c7f4c2f9d962bdc9bd4fff8b3cb93</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2006</creationdate><topic>Adolescent</topic><topic>Adult</topic><topic>Aged</topic><topic>Cross-Sectional Studies</topic><topic>Data Interpretation, Statistical</topic><topic>Female</topic><topic>France</topic><topic>Humans</topic><topic>Male</topic><topic>Middle Aged</topic><topic>Muscular dystrophies</topic><topic>Neuromuscular diseases</topic><topic>Neuromuscular Diseases - genetics</topic><topic>Neuromuscular Diseases - physiopathology</topic><topic>Neuromuscular Diseases - psychology</topic><topic>Outcome Assessment (Health Care)</topic><topic>Psychometrics - instrumentation</topic><topic>Quality of Life</topic><topic>Questionnaires</topic><topic>Reproducibility of Results</topic><topic>Sickness Impact Profile</topic><topic>Surveys and Questionnaires - standards</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Boyer, F.</creatorcontrib><creatorcontrib>Morrone, I.</creatorcontrib><creatorcontrib>Laffont, I.</creatorcontrib><creatorcontrib>Dizien, O.</creatorcontrib><creatorcontrib>Etienne, J.C.</creatorcontrib><creatorcontrib>Novella, J.L.</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><jtitle>Neuromuscular disorders : NMD</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Boyer, F.</au><au>Morrone, I.</au><au>Laffont, I.</au><au>Dizien, O.</au><au>Etienne, J.C.</au><au>Novella, J.L.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Health related quality of life in people with hereditary neuromuscular diseases: An investigation of test–retest agreement with comparison between two generic questionnaires, the Nottingham health profile and the short form-36 items</atitle><jtitle>Neuromuscular disorders : NMD</jtitle><addtitle>Neuromuscul Disord</addtitle><date>2006-02-01</date><risdate>2006</risdate><volume>16</volume><issue>2</issue><spage>99</spage><epage>106</epage><pages>99-106</pages><issn>0960-8966</issn><eissn>1873-2364</eissn><abstract>The present work attempts to define reproducibility, test–retest and internal consistencies of two standardised tools that measure health related quality of life (HRQoL), specifically as they apply to hereditary neuromuscular disease (HNMD): the Nottingham health profile (NHP) and the medical outcome study 36-item short-form questionnaire (MOS SF-36). 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| subjects | Adolescent Adult Aged Cross-Sectional Studies Data Interpretation, Statistical Female France Humans Male Middle Aged Muscular dystrophies Neuromuscular diseases Neuromuscular Diseases - genetics Neuromuscular Diseases - physiopathology Neuromuscular Diseases - psychology Outcome Assessment (Health Care) Psychometrics - instrumentation Quality of Life Questionnaires Reproducibility of Results Sickness Impact Profile Surveys and Questionnaires - standards |
| title | Health related quality of life in people with hereditary neuromuscular diseases: An investigation of test–retest agreement with comparison between two generic questionnaires, the Nottingham health profile and the short form-36 items |
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