{"id":"https://openalex.org/W7225616945","doi":"https://doi.org/10.1111/jns.70178","title":"Development and Cross\u2010Cultural Validation of a Quality\u2010of\u2010Life and Needs Questionnaire for Adult Charcot\u2013Marie\u2013Tooth Patients","display_name":"Development and Cross\u2010Cultural Validation of a Quality\u2010of\u2010Life and Needs Questionnaire for Adult Charcot\u2013Marie\u2013Tooth Patients","publication_year":2026,"publication_date":"2026-11-09","ids":{"openalex":"https://openalex.org/W7225616945","doi":"https://doi.org/10.1111/jns.70178","pmid":"https://pubmed.ncbi.nlm.nih.gov/43003674"},"language":"en","primary_location":{"id":"doi:10.1111/jns.70178","doi":"https://doi.org/10.1111/jns.70178","is_oa":true,"landing_page_url":"https://doi.org/10.1111/jns.70178","pdf_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/jns.70178","source":{"id":"https://openalex.org/S91695523","display_name":"Journal of the Peripheral Nervous System","issn_l":"1085-9489","issn":["1085-9489","1529-8027"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-1","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the Peripheral Nervous System","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"bronze","oa_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/jns.70178","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5083041186","display_name":"Nicolae Grecu","orcid":"https://orcid.org/0000-0003-4493-1133","observed_orcids":["https://orcid.org/0000-0003-4493-1133"]},"institutions":[{"id":"https://openalex.org/I4388891865","display_name":"Bucharest Emergency University Hospital","ror":"https://ror.org/051v1dy68","country_code":"RO","type":"healthcare","lineage":["https://openalex.org/I4388891865"]}],"countries":["RO"],"is_corresponding":true,"raw_author_name":"Nicolae Grecu","raw_affiliation_strings":["Neurology Department University Emergency Hospital  Bucharest Romania"],"raw_orcid":"https://orcid.org/0000-0003-4493-1133","affiliations":[{"raw_affiliation_string":"Neurology Department University Emergency Hospital  Bucharest Romania","institution_ids":["https://openalex.org/I4388891865"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5035830935","display_name":"Angela Rita Puma","orcid":"https://orcid.org/0000-0002-4218-6128","observed_orcids":["https://orcid.org/0000-0002-4218-6128"]},"institutions":[{"id":"https://openalex.org/I3018988418","display_name":"Centre Hospitalier Universitaire de Nice","ror":"https://ror.org/05qsjq305","country_code":"FR","type":"healthcare","lineage":["https://openalex.org/I3018988418"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"Angela Puma","raw_affiliation_strings":["Neuromuscular Department University Hospital of Nice  Nice France"],"raw_orcid":"https://orcid.org/0000-0002-4218-6128","affiliations":[{"raw_affiliation_string":"Neuromuscular Department University Hospital of Nice  Nice France","institution_ids":["https://openalex.org/I3018988418"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5119020367","display_name":"Aurora Parrotta","orcid":"https://orcid.org/0009-0002-8176-0679","observed_orcids":["https://orcid.org/0009-0002-8176-0679"]},"institutions":[{"id":"https://openalex.org/I3018988418","display_name":"Centre Hospitalier Universitaire de Nice","ror":"https://ror.org/05qsjq305","country_code":"FR","type":"healthcare","lineage":["https://openalex.org/I3018988418"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"Aurora Parrotta","raw_affiliation_strings":["Neuromuscular Department University Hospital of Nice  Nice France"],"raw_orcid":"https://orcid.org/0009-0002-8176-0679","affiliations":[{"raw_affiliation_string":"Neuromuscular Department University Hospital of Nice  Nice France","institution_ids":["https://openalex.org/I3018988418"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5089104035","display_name":"Michele Cavalli","orcid":"https://orcid.org/0009-0001-4049-5146","observed_orcids":["https://orcid.org/0009-0001-4049-5146"]},"institutions":[{"id":"https://openalex.org/I3018988418","display_name":"Centre Hospitalier Universitaire de Nice","ror":"https://ror.org/05qsjq305","country_code":"FR","type":"healthcare","lineage":["https://openalex.org/I3018988418"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"Michele Cavalli","raw_affiliation_strings":["Neuromuscular Department University Hospital of Nice  Nice France"],"raw_orcid":"https://orcid.org/0009-0001-4049-5146","affiliations":[{"raw_affiliation_string":"Neuromuscular Department University Hospital of Nice  Nice France","institution_ids":["https://openalex.org/I3018988418"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5053249468","display_name":"Andra Ezaru","orcid":"https://orcid.org/0009-0000-0794-3157","observed_orcids":["https://orcid.org/0009-0000-0794-3157"]},"institutions":[{"id":"https://openalex.org/I3018988418","display_name":"Centre Hospitalier Universitaire de Nice","ror":"https://ror.org/05qsjq305","country_code":"FR","type":"healthcare","lineage":["https://openalex.org/I3018988418"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"Andra Ezaru","raw_affiliation_strings":["Neuromuscular Department University Hospital of Nice  Nice France"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Neuromuscular Department University Hospital of Nice  Nice France","institution_ids":["https://openalex.org/I3018988418"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5046917715","display_name":"R. Badea","orcid":"https://orcid.org/0000-0003-1125-4412","observed_orcids":["https://orcid.org/0000-0003-1125-4412"]},"institutions":[{"id":"https://openalex.org/I162051807","display_name":"Carol Davila University of Medicine and Pharmacy","ror":"https://ror.org/04fm87419","country_code":"RO","type":"education","lineage":["https://openalex.org/I162051807"]},{"id":"https://openalex.org/I4388891865","display_name":"Bucharest Emergency University Hospital","ror":"https://ror.org/051v1dy68","country_code":"RO","type":"healthcare","lineage":["https://openalex.org/I4388891865"]}],"countries":["RO"],"is_corresponding":false,"raw_author_name":"Raluca\u2010\u0218tefania Badea","raw_affiliation_strings":["Carol Davila University of Medicine and Pharmacy  Bucharest Romania","Neurology Department University Emergency Hospital  Bucharest Romania"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Carol Davila University of Medicine and Pharmacy  Bucharest Romania","institution_ids":["https://openalex.org/I162051807"]},{"raw_affiliation_string":"Neurology Department University Emergency Hospital  Bucharest Romania","institution_ids":["https://openalex.org/I4388891865"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5101191229","display_name":"Mihaela Popa","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4388891865","display_name":"Bucharest Emergency University Hospital","ror":"https://ror.org/051v1dy68","country_code":"RO","type":"healthcare","lineage":["https://openalex.org/I4388891865"]}],"countries":["RO"],"is_corresponding":false,"raw_author_name":"Mihaela Popa","raw_affiliation_strings":["Neurology Department University Emergency Hospital  Bucharest Romania"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Neurology Department University Emergency Hospital  Bucharest Romania","institution_ids":["https://openalex.org/I4388891865"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5116166235","display_name":"Ileana Maria Vod\u0103","orcid":"https://orcid.org/0009-0004-9187-894X","observed_orcids":["https://orcid.org/0009-0004-9187-894X"]},"institutions":[{"id":"https://openalex.org/I4388891865","display_name":"Bucharest Emergency University Hospital","ror":"https://ror.org/051v1dy68","country_code":"RO","type":"healthcare","lineage":["https://openalex.org/I4388891865"]}],"countries":["RO"],"is_corresponding":false,"raw_author_name":"Ileana\u2010Maria Vod\u0103","raw_affiliation_strings":["Neurology Department University Emergency Hospital  Bucharest Romania"],"raw_orcid":"https://orcid.org/0009-0004-9187-894X","affiliations":[{"raw_affiliation_string":"Neurology Department University Emergency Hospital  Bucharest Romania","institution_ids":["https://openalex.org/I4388891865"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5068521533","display_name":"Sabrina Sacconi","orcid":"https://orcid.org/0000-0002-0246-1455","observed_orcids":["https://orcid.org/0000-0002-0246-1455"]},"institutions":[{"id":"https://openalex.org/I3018988418","display_name":"Centre Hospitalier Universitaire de Nice","ror":"https://ror.org/05qsjq305","country_code":"FR","type":"healthcare","lineage":["https://openalex.org/I3018988418"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"Sabrina Sacconi","raw_affiliation_strings":["Neuromuscular Department University Hospital of Nice  Nice France"],"raw_orcid":"https://orcid.org/0000-0002-0246-1455","affiliations":[{"raw_affiliation_string":"Neuromuscular Department University Hospital of Nice  Nice France","institution_ids":["https://openalex.org/I3018988418"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5032261495","display_name":"Cristina Tiu","orcid":"https://orcid.org/0000-0001-8532-6218","observed_orcids":["https://orcid.org/0000-0001-8532-6218"]},"institutions":[{"id":"https://openalex.org/I162051807","display_name":"Carol Davila University of Medicine and Pharmacy","ror":"https://ror.org/04fm87419","country_code":"RO","type":"education","lineage":["https://openalex.org/I162051807"]},{"id":"https://openalex.org/I4388891865","display_name":"Bucharest Emergency University Hospital","ror":"https://ror.org/051v1dy68","country_code":"RO","type":"healthcare","lineage":["https://openalex.org/I4388891865"]}],"countries":["RO"],"is_corresponding":false,"raw_author_name":"Cristina Tiu","raw_affiliation_strings":["Carol Davila University of Medicine and Pharmacy  Bucharest Romania","Neurology Department University Emergency Hospital  Bucharest Romania"],"raw_orcid":"https://orcid.org/0000-0001-8532-6218","affiliations":[{"raw_affiliation_string":"Carol Davila University of Medicine and Pharmacy  Bucharest Romania","institution_ids":["https://openalex.org/I162051807"]},{"raw_affiliation_string":"Neurology Department University Emergency Hospital  Bucharest Romania","institution_ids":["https://openalex.org/I4388891865"]}]}],"institutions":[],"countries_distinct_count":2,"institutions_distinct_count":3,"corresponding_author_ids":["https://openalex.org/A5083041186"],"corresponding_institution_ids":["https://openalex.org/I4388891865"],"apc_list":{"value":4550,"currency":"USD","value_usd":4550},"apc_paid":null,"fwci":0.0,"has_fulltext":true,"cited_by_count":0,"citation_normalized_percentile":{"value":0.0,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"31","issue":"4","first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T12331","display_name":"Hereditary Neurological Disorders","score":0.9945999979972839,"subfield":{"id":"https://openalex.org/subfields/2804","display_name":"Cellular and Molecular Neuroscience"},"field":{"id":"https://openalex.org/fields/28","display_name":"Neuroscience"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},"topics":[{"id":"https://openalex.org/T12331","display_name":"Hereditary Neurological Disorders","score":0.9945999979972839,"subfield":{"id":"https://openalex.org/subfields/2804","display_name":"Cellular and Molecular Neuroscience"},"field":{"id":"https://openalex.org/fields/28","display_name":"Neuroscience"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}},{"id":"https://openalex.org/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":0.002099999925121665,"subfield":{"id":"https://openalex.org/subfields/2002","display_name":"Economics and Econometrics"},"field":{"id":"https://openalex.org/fields/20","display_name":"Economics, Econometrics and Finance"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T13117","display_name":"Health Education and Validation","score":0.00039999998989515007,"subfield":{"id":"https://openalex.org/subfields/2922","display_name":"Research and Theory"},"field":{"id":"https://openalex.org/fields/29","display_name":"Nursing"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/charcot-marie-tooth-disease","display_name":"Charcot-Marie-Tooth disease","score":0.9919999837875366},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"quality of life","score":0.8790000081062317},{"id":"https://openalex.org/keywords/unmet-healthcare-needs","display_name":"unmet health needs","score":0.9139999747276306},{"id":"https://openalex.org/keywords/patient-reported-outcome-measures","display_name":"patient-reported outcome measures","score":0.9629999995231628},{"id":"https://openalex.org/keywords/questionnaire-development","display_name":"questionnaire development","score":0.7149999737739563},{"id":"https://openalex.org/keywords/cross-cultural-validation","display_name":"cross-cultural validation","score":0.9909999966621399},{"id":"https://openalex.org/keywords/family-and-social-life","display_name":"family and social life","score":0.7250000238418579},{"id":"https://openalex.org/keywords/disability","display_name":"disability","score":0.6150000095367432},{"id":"https://openalex.org/keywords/activities-of-daily-living","display_name":"activities of daily living","score":0.8069999814033508},{"id":"https://openalex.org/keywords/gait-disturbance","display_name":"gait disturbance","score":0.921999990940094},{"id":"https://openalex.org/keywords/romania","display_name":"Romania","score":0.7179999947547913},{"id":"https://openalex.org/keywords/france","display_name":"France","score":0.9990000128746033}],"concepts":[{"id":"https://openalex.org/C2777364248","wikidata":"https://www.wikidata.org/wiki/Q1150737","display_name":"Prom","level":2,"score":0.6988999843597412},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.652999997138977},{"id":"https://openalex.org/C23131810","wikidata":"https://www.wikidata.org/wiki/Q818574","display_name":"Observational study","level":2,"score":0.6462000012397766},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.580299973487854},{"id":"https://openalex.org/C105776082","wikidata":"https://www.wikidata.org/wiki/Q617473","display_name":"Likert scale","level":2,"score":0.5429999828338623},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.5307000279426575},{"id":"https://openalex.org/C72563966","wikidata":"https://www.wikidata.org/wiki/Q1303415","display_name":"Cohort","level":2,"score":0.517300009727478},{"id":"https://openalex.org/C201903717","wikidata":"https://www.wikidata.org/wiki/Q1778788","display_name":"Cohort study","level":2,"score":0.4603999853134155},{"id":"https://openalex.org/C3018868096","wikidata":"https://www.wikidata.org/wiki/Q2693233","display_name":"Internal consistency","level":3,"score":0.430400013923645},{"id":"https://openalex.org/C79544238","wikidata":"https://www.wikidata.org/wiki/Q423243","display_name":"Activities of daily living","level":2,"score":0.3878999948501587},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.3869999945163727},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.36169999837875366},{"id":"https://openalex.org/C2776436953","wikidata":"https://www.wikidata.org/wiki/Q5163215","display_name":"Consistency (knowledge bases)","level":2,"score":0.3531999886035919},{"id":"https://openalex.org/C2779974597","wikidata":"https://www.wikidata.org/wiki/Q28448986","display_name":"Clinical Practice","level":2,"score":0.3334999978542328},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.3292999863624573},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.3246999979019165},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.3212999999523163},{"id":"https://openalex.org/C171606756","wikidata":"https://www.wikidata.org/wiki/Q506132","display_name":"Psychometrics","level":2,"score":0.31709998846054077},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.30970001220703125},{"id":"https://openalex.org/C158016649","wikidata":"https://www.wikidata.org/wiki/Q161726","display_name":"Multinational corporation","level":2,"score":0.3027999997138977},{"id":"https://openalex.org/C2779530757","wikidata":"https://www.wikidata.org/wiki/Q1207505","display_name":"Quality (philosophy)","level":2,"score":0.296099990606308},{"id":"https://openalex.org/C28718268","wikidata":"https://www.wikidata.org/wiki/Q4118620","display_name":"Needs assessment","level":2,"score":0.28769999742507935},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.26089999079704285},{"id":"https://openalex.org/C174106493","wikidata":"https://www.wikidata.org/wiki/Q1057880","display_name":"External validity","level":2,"score":0.2597000002861023},{"id":"https://openalex.org/C2777303404","wikidata":"https://www.wikidata.org/wiki/Q759757","display_name":"Convergence (economics)","level":2,"score":0.2547000050544739}],"mesh":[{"descriptor_ui":"D000071066","descriptor_name":"Patient Reported Outcome Measures","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D000328","descriptor_name":"Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000368","descriptor_name":"Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002607","descriptor_name":"Charcot-Marie-Tooth Disease","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D002607","descriptor_name":"Charcot-Marie-Tooth Disease","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D003431","descriptor_name":"Cross-Cultural Comparison","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008875","descriptor_name":"Middle Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D011594","descriptor_name":"Psychometrics","qualifier_ui":"Q000295","qualifier_name":"instrumentation","is_major_topic":true},{"descriptor_ui":"D011594","descriptor_name":"Psychometrics","qualifier_ui":"Q000592","qualifier_name":"standards","is_major_topic":true},{"descriptor_ui":"D011788","descriptor_name":"Quality of Life","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D011795","descriptor_name":"Surveys and Questionnaires","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D015203","descriptor_name":"Reproducibility of Results","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":2,"locations":[{"id":"doi:10.1111/jns.70178","doi":"https://doi.org/10.1111/jns.70178","is_oa":true,"landing_page_url":"https://doi.org/10.1111/jns.70178","pdf_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/jns.70178","source":{"id":"https://openalex.org/S91695523","display_name":"Journal of the Peripheral Nervous System","issn_l":"1085-9489","issn":["1085-9489","1529-8027"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-1","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the Peripheral Nervous System","raw_type":"journal-article"},{"id":"pmid:43003674","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/43003674","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the peripheral nervous system : JPNS","raw_type":"Journal Article"}],"best_oa_location":{"id":"doi:10.1111/jns.70178","doi":"https://doi.org/10.1111/jns.70178","is_oa":true,"landing_page_url":"https://doi.org/10.1111/jns.70178","pdf_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/jns.70178","source":{"id":"https://openalex.org/S91695523","display_name":"Journal of the Peripheral Nervous System","issn_l":"1085-9489","issn":["1085-9489","1529-8027"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-1","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the Peripheral Nervous System","raw_type":"journal-article"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":1.0}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W7225616945.pdf","grobid_xml":"https://content.openalex.org/works/W7225616945.grobid-xml"},"referenced_works_count":12,"referenced_works":["https://openalex.org/W2000575070","https://openalex.org/W2045578664","https://openalex.org/W2128759000","https://openalex.org/W2133323217","https://openalex.org/W2294322619","https://openalex.org/W2883873817","https://openalex.org/W3008958050","https://openalex.org/W3033446033","https://openalex.org/W3165175564","https://openalex.org/W4221014483","https://openalex.org/W4293089184","https://openalex.org/W4403342914"],"related_works":["https://openalex.org/W7127083537","https://openalex.org/W4405749806","https://openalex.org/W2000575070","https://openalex.org/W3107858189","https://openalex.org/W2038029223","https://openalex.org/W2023500103","https://openalex.org/W4319333416","https://openalex.org/W2883873817","https://openalex.org/W2024299611","https://openalex.org/W2906532209"],"abstract_inverted_index":{"BACKGROUND":[0],"AND":[1],"AIMS:":[2],"Existing":[3],"patient-reported":[4],"outcome":[5],"measures":[6,233],"(PROMs)":[7],"for":[8,128,135,161],"Charcot-Marie-Tooth":[9,26],"disease":[10,14,59],"(CMT)":[11],"either":[12],"lack":[13],"specificity":[15],"or":[16],"do":[17],"not":[18,223],"assess":[19],"patients'":[20],"healthcare":[21,47,184,214],"needs.":[22],"We":[23],"developed":[24],"the":[25,83,94,136,140,195],"Quality":[27],"of":[28,43,82,155,165,187],"Life":[29],"and":[30,45,61,70,75,96,103,113,168,177,197,212,238],"Needs":[31],"questionnaire":[32],"(CMT-QoLN),":[33],"a":[34,203],"brief":[35],"disease-specific":[36,205],"PROM":[37,206],"designed":[38],"to":[39,98,126,181],"evaluate":[40],"both":[41,209],"quality":[42],"life":[44,72],"unmet":[46,213],"needs":[48,77,215],"in":[49,101,139,183,216,234,244],"adults":[50,217],"with":[51,80,110,116,152,163,191,218],"CMT.":[52,219],"METHODS:":[53],"The":[54,146,200],"CMT-QoLN":[55,147,201],"comprises":[56],"four":[57],"domains:":[58],"symptoms":[60],"impact":[62,66],"(19":[63],"items),":[64,68,74,79],"work-related":[65],"(7":[67,73,78],"family":[69],"social":[71],"disease-related":[76],"38":[81],"items":[84],"scored":[85],"on":[86],"5-point":[87],"Likert":[88],"scales.":[89],"It":[90],"was":[91,124],"administered":[92],"alongside":[93],"EQ-5D-5L":[95,196],"SF-36":[97],"CMT":[99],"patients":[100,151],"Romania":[102,176],"France.":[104],"Internal":[105,122],"consistency,":[106],"known-groups":[107],"validity,":[108],"correlations":[109],"clinical":[111,236],"variables,":[112],"group-level":[114],"convergence":[115],"generic":[117,231],"instruments":[118],"were":[119,189],"evaluated.":[120],"RESULTS:":[121],"consistency":[123],"good":[125],"excellent":[127],"most":[129],"domains":[130],"(Cronbach's":[131],"\u03b1":[132],"0.81-0.95),":[133],"except":[134],"healthcare-needs":[137],"domain":[138],"French":[141],"cohort":[142],"(\u03b1":[143],"=":[144],"0.68).":[145],"discriminated":[148],"effectively":[149],"between":[150,175],"different":[153],"levels":[154],"disability,":[156],"showing":[157],"large":[158],"effect":[159],"sizes":[160],"assistance":[162],"activities":[164],"daily":[166],"living":[167],"walking":[169],"impairment.":[170],"Healthcare-needs":[171],"scores":[172],"differed":[173],"significantly":[174],"France,":[178],"suggesting":[179],"sensitivity":[180],"differences":[182],"organization.":[185],"Patterns":[186],"impairment":[188],"consistent":[190],"those":[192],"obtained":[193],"using":[194],"SF-36.":[198],"INTERPRETATION:":[199],"is":[202,247],"feasible":[204],"that":[207],"captures":[208],"functional":[210],"burden":[211],"By":[220],"integrating":[221],"dimensions":[222],"addressed":[224],"by":[225],"existing":[226],"instruments,":[227],"it":[228],"may":[229],"complement":[230],"quality-of-life":[232],"routine":[235],"practice":[237],"multinational":[239],"observational":[240],"studies.":[241],"Further":[242],"validation":[243],"larger":[245],"cohorts":[246],"warranted.":[248]},"counts_by_year":[],"updated_date":"2026-11-11T12:16:26.678958","created_date":"2026-11-10T00:00:00"}
