{"id":"https://openalex.org/W4409434653","doi":"https://doi.org/10.1016/j.neurol.2025.03.011","title":"The diagnostic and therapeutic journey of Tourette syndrome: Thematic analysis of the difficulties experienced by parents of patients","display_name":"The diagnostic and therapeutic journey of Tourette syndrome: Thematic analysis of the difficulties experienced by parents of patients","publication_year":2025,"publication_date":"2025-04-14","ids":{"openalex":"https://openalex.org/W4409434653","doi":"https://doi.org/10.1016/j.neurol.2025.03.011","pmid":"https://pubmed.ncbi.nlm.nih.gov/40234118"},"language":"en","primary_location":{"id":"doi:10.1016/j.neurol.2025.03.011","doi":"https://doi.org/10.1016/j.neurol.2025.03.011","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.neurol.2025.03.011","pdf_url":null,"source":{"id":"https://openalex.org/S124451323","display_name":"Revue Neurologique","issn_l":"0035-3787","issn":["0035-3787","2213-0004"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-d","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-40","russia-white-list-2"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Revue Neurologique","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"hybrid","oa_url":"https://doi.org/10.1016/j.neurol.2025.03.011","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5094136701","display_name":"Z\u00e9lia Breton","orcid":"https://orcid.org/0009-0005-2524-2772","observed_orcids":["https://orcid.org/0009-0005-2524-2772"]},"institutions":[{"id":"https://openalex.org/I154526488","display_name":"Inserm","ror":"https://ror.org/02vjkv261","country_code":"FR","type":"government","lineage":["https://openalex.org/I154526488"]},{"id":"https://openalex.org/I195731000","display_name":"Universit\u00e9 de Versailles Saint-Quentin-en-Yvelines","ror":"https://ror.org/03mkjjy25","country_code":"FR","type":"education","lineage":["https://openalex.org/I195731000","https://openalex.org/I277688954"]},{"id":"https://openalex.org/I277688954","display_name":"Universit\u00e9 Paris-Saclay","ror":"https://ror.org/03xjwb503","country_code":"FR","type":"education","lineage":["https://openalex.org/I277688954"]},{"id":"https://openalex.org/I4210103698","display_name":"Centre de recherche en Epid\u00e9miologie et Sant\u00e9 des Populations","ror":"https://ror.org/01ed4t417","country_code":"FR","type":"facility","lineage":["https://openalex.org/I154526488","https://openalex.org/I195731000","https://openalex.org/I277688954","https://openalex.org/I4210097159","https://openalex.org/I4210103698","https://openalex.org/I4210164847","https://openalex.org/I4405259118"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"Z. Breton","raw_affiliation_strings":["Universit\u00e9 Paris-Saclay, UVSQ, Inserm, Gustave Roussy, CESP, 94805 Villejuif, France; Lyv Healthcare, Nantes, France"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Universit\u00e9 Paris-Saclay, UVSQ, Inserm, Gustave Roussy, CESP, 94805 Villejuif, France; Lyv Healthcare, Nantes, France","institution_ids":["https://openalex.org/I154526488","https://openalex.org/I195731000","https://openalex.org/I277688954","https://openalex.org/I4210103698"]}]},{"author_position":"middle","author":{"id":null,"display_name":"P. Denis","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I21491767","display_name":"Aix-Marseille Universit\u00e9","ror":"https://ror.org/035xkbk20","country_code":"FR","type":"education","lineage":["https://openalex.org/I21491767"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"P. Denis","raw_affiliation_strings":["Laboratoire Psychologie Sociale (EA 849), Universit\u00e9 d'Aix Marseille, Marseille, France"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Laboratoire Psychologie Sociale (EA 849), Universit\u00e9 d'Aix Marseille, Marseille, France","institution_ids":["https://openalex.org/I21491767"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5069283990","display_name":"V\u00e9ronique Gouss\u00e9","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I66456633","display_name":"Universit\u00e9 de N\u00eemes","ror":"https://ror.org/044t4x544","country_code":"FR","type":"education","lineage":["https://openalex.org/I4405261603","https://openalex.org/I66456633"]}],"countries":["FR"],"is_corresponding":false,"raw_author_name":"V. Gouss\u00e9","raw_affiliation_strings":["Universit\u00e9 de N\u00eemes, 30021 N\u00eemes, France"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Universit\u00e9 de N\u00eemes, 30021 N\u00eemes, France","institution_ids":["https://openalex.org/I66456633"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5026713530","display_name":"Andreas Hartmann","orcid":"https://orcid.org/0000-0002-0335-984X","observed_orcids":["https://orcid.org/0000-0002-0335-984X","https://orcid.org/0000-0002-4406-8264"]},"institutions":[{"id":"https://openalex.org/I39804081","display_name":"Sorbonne Universit\u00e9","ror":"https://ror.org/02en5vm52","country_code":"FR","type":"education","lineage":["https://openalex.org/I39804081"]},{"id":"https://openalex.org/I4210097159","display_name":"Assistance Publique \u2013 H\u00f4pitaux de Paris","ror":"https://ror.org/00pg5jh14","country_code":"FR","type":"healthcare","lineage":["https://openalex.org/I4210097159"]},{"id":"https://openalex.org/I4210121705","display_name":"Piti\u00e9-Salp\u00eatri\u00e8re Hospital","ror":"https://ror.org/02mh9a093","country_code":"FR","type":"healthcare","lineage":["https://openalex.org/I4210097159","https://openalex.org/I4210121705"]}],"countries":["FR"],"is_corresponding":true,"raw_author_name":"A. Hartmann","raw_affiliation_strings":["Centre de R\u00e9f\u00e9rence National Maladie Rare: \u00ab\u00a0Syndrome Gilles de la Tourette\u00a0\u00bb, D\u00e9partement de Neurologie, DMU Neurosciences, AP-HP, Sorbonne Universit\u00e9s, Groupe Hospitalier Piti\u00e9-Salp\u00eatri\u00e8re, 75651 Paris Cedex 13, France. Electronic address: andreas.hartmann@aphp.fr"],"raw_orcid":"https://orcid.org/0000-0002-4406-8264","affiliations":[{"raw_affiliation_string":"Centre de R\u00e9f\u00e9rence National Maladie Rare: \u00ab\u00a0Syndrome Gilles de la Tourette\u00a0\u00bb, D\u00e9partement de Neurologie, DMU Neurosciences, AP-HP, Sorbonne Universit\u00e9s, Groupe Hospitalier Piti\u00e9-Salp\u00eatri\u00e8re, 75651 Paris Cedex 13, France. Electronic address: andreas.hartmann@aphp.fr","institution_ids":["https://openalex.org/I39804081","https://openalex.org/I4210097159","https://openalex.org/I4210121705"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":9,"corresponding_author_ids":["https://openalex.org/A5026713530"],"corresponding_institution_ids":["https://openalex.org/I39804081","https://openalex.org/I4210097159","https://openalex.org/I4210121705"],"apc_list":{"value":3620,"currency":"USD","value_usd":3620},"apc_paid":{"value":3620,"currency":"USD","value_usd":3620},"fwci":5.6473,"has_fulltext":false,"cited_by_count":5,"citation_normalized_percentile":{"value":0.95424426,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":94,"max":98},"biblio":{"volume":"181","issue":"6","first_page":"544","last_page":"555"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11123","display_name":"Obsessive-Compulsive Spectrum Disorders","score":0.9990000128746033,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},"topics":[{"id":"https://openalex.org/T11123","display_name":"Obsessive-Compulsive Spectrum Disorders","score":0.9990000128746033,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11632","display_name":"Family and Disability Support Research","score":9.999999747378752e-05,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T12684","display_name":"Stuttering Research and Treatment","score":9.999999747378752e-05,"subfield":{"id":"https://openalex.org/subfields/3203","display_name":"Clinical Psychology"},"field":{"id":"https://openalex.org/fields/32","display_name":"Psychology"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/tourette-syndrome","display_name":"Tourette syndrome","score":1.0},{"id":"https://openalex.org/keywords/delayed-diagnosis","display_name":"delayed diagnosis","score":0.8889999985694885},{"id":"https://openalex.org/keywords/treatment-delay","display_name":"treatment delay","score":0.6819999814033508},{"id":"https://openalex.org/keywords/diagnostic-journey","display_name":"diagnostic journey","score":0.6499999761581421},{"id":"https://openalex.org/keywords/treatment-journey","display_name":"treatment journey","score":0.39800000190734863},{"id":"https://openalex.org/keywords/parental-distress","display_name":"parental distress","score":0.9679999947547913},{"id":"https://openalex.org/keywords/pediatric-neurology","display_name":"pediatric neurology","score":0.492000013589859},{"id":"https://openalex.org/keywords/family-experiences","display_name":"family experiences","score":0.4090000092983246}],"concepts":[{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.5231947898864746},{"id":"https://openalex.org/C74196892","wikidata":"https://www.wikidata.org/wiki/Q7781188","display_name":"Thematic analysis","level":3,"score":0.4949173331260681},{"id":"https://openalex.org/C2777026814","wikidata":"https://www.wikidata.org/wiki/Q191779","display_name":"Tourette syndrome","level":2,"score":0.4495844841003418},{"id":"https://openalex.org/C2777200579","wikidata":"https://www.wikidata.org/wiki/Q738538","display_name":"Tics","level":2,"score":0.4428713321685791},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.4350045323371887},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.3965657949447632},{"id":"https://openalex.org/C542102704","wikidata":"https://www.wikidata.org/wiki/Q183257","display_name":"Psychotherapist","level":1,"score":0.3700439929962158},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.3686780333518982},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.16209769248962402},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.09034141898155212},{"id":"https://openalex.org/C19165224","wikidata":"https://www.wikidata.org/wiki/Q23404","display_name":"Anthropology","level":1,"score":0.08036056160926819}],"mesh":[{"descriptor_ui":"D000293","descriptor_name":"Adolescent","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000293","descriptor_name":"Adolescent","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000328","descriptor_name":"Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000328","descriptor_name":"Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002675","descriptor_name":"Child, Preschool","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002675","descriptor_name":"Child, Preschool","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":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005879","descriptor_name":"Tourette Syndrome","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D005879","descriptor_name":"Tourette Syndrome","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D005879","descriptor_name":"Tourette Syndrome","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D005879","descriptor_name":"Tourette Syndrome","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D005879","descriptor_name":"Tourette Syndrome","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D005879","descriptor_name":"Tourette Syndrome","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D006801","descriptor_name":"Humans","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":"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":"D008875","descriptor_name":"Middle Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010290","descriptor_name":"Parents","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D010290","descriptor_name":"Parents","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D036301","descriptor_name":"Qualitative Research","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D036301","descriptor_name":"Qualitative Research","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":3,"locations":[{"id":"doi:10.1016/j.neurol.2025.03.011","doi":"https://doi.org/10.1016/j.neurol.2025.03.011","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.neurol.2025.03.011","pdf_url":null,"source":{"id":"https://openalex.org/S124451323","display_name":"Revue Neurologique","issn_l":"0035-3787","issn":["0035-3787","2213-0004"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-d","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-40","russia-white-list-2"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Revue Neurologique","raw_type":"journal-article"},{"id":"pmid:40234118","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/40234118","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":"Revue neurologique","raw_type":"Journal Article"},{"id":"pmh:oai:HAL:hal-05069980v1","doi":null,"is_oa":true,"landing_page_url":"https://hal.science/hal-05069980","pdf_url":null,"source":{"id":"https://openalex.org/S4406922276","display_name":"INRIA a CCSD electronic archive server","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Revue Neurologique, In press, ⟨10.1016/j.neurol.2025.03.011⟩","raw_type":"info:eu-repo/semantics/article"}],"best_oa_location":{"id":"doi:10.1016/j.neurol.2025.03.011","doi":"https://doi.org/10.1016/j.neurol.2025.03.011","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.neurol.2025.03.011","pdf_url":null,"source":{"id":"https://openalex.org/S124451323","display_name":"Revue Neurologique","issn_l":"0035-3787","issn":["0035-3787","2213-0004"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-d","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-40","russia-white-list-2"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Revue Neurologique","raw_type":"journal-article"},"sustainable_development_goals":[{"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3","score":0.9537000060081482}],"sustainable_development_goals_aurora":[],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":26,"referenced_works":["https://openalex.org/W1212129728","https://openalex.org/W1964125508","https://openalex.org/W2021194895","https://openalex.org/W2046296574","https://openalex.org/W2067404301","https://openalex.org/W2069597946","https://openalex.org/W2077033666","https://openalex.org/W2107920526","https://openalex.org/W2122328334","https://openalex.org/W2167353164","https://openalex.org/W2168898987","https://openalex.org/W2402754323","https://openalex.org/W2524046716","https://openalex.org/W2943000338","https://openalex.org/W2991487273","https://openalex.org/W3004269394","https://openalex.org/W3172385031","https://openalex.org/W3178233673","https://openalex.org/W3205587418","https://openalex.org/W3207424689","https://openalex.org/W4237551365","https://openalex.org/W4297977448","https://openalex.org/W4307727465","https://openalex.org/W4319827814","https://openalex.org/W4327814841","https://openalex.org/W4384201175"],"related_works":["https://openalex.org/W4381434097","https://openalex.org/W935000320","https://openalex.org/W2016052345","https://openalex.org/W3014506158","https://openalex.org/W2292207655","https://openalex.org/W2519639851","https://openalex.org/W2081073419","https://openalex.org/W2381794320","https://openalex.org/W2318168806","https://openalex.org/W2970669093"],"abstract_inverted_index":{"OBJECTIVE:":[0],"The":[1],"aim":[2],"of":[3,13,41,75,88,96,103,116],"this":[4],"thematic":[5,30],"analysis":[6,31],"is":[7],"to":[8,19,80,141],"formalize":[9],"the":[10,20,54,76,86,89,94,97,101,104,114,121,136],"parental":[11,92],"trajectories":[12],"therapeutic":[14,124,153],"wandering,":[15],"from":[16,85],"first":[17],"symptoms":[18],"diagnosis":[21],"until":[22],"disease":[23,90],"management.":[24],"METHODS:":[25],"An":[26],"inductive":[27,64],"and":[28,46,83,100,123,144,152],"deductive":[29,72],"was":[32],"carried":[33],"out":[34],"based":[35],"on":[36,112],"25":[37],"interviews":[38,55],"with":[39,43,56,118,146],"parents":[40,115,143],"children":[42,117,145],"TS.":[44],"Statistical":[45],"association":[47],"tests":[48],"were":[49,60,67,78],"also":[50],"conducted.":[51],"RESULTS:":[52],"From":[53],"parents,":[57],"284":[58],"codes":[59],"categorized":[61],"into":[62,70],"19":[63],"subthemes,":[65],"which":[66],"then":[68],"grouped":[69],"5":[71],"themes.":[73],"Some":[74],"subthemes":[77],"relevant":[79],"all":[81],"interviewees,":[82],"ranged":[84],"description":[87],"characteristics,":[91],"distress,":[93],"impact":[95],"TS":[98,119,147],"diagnosis,":[99],"evaluation":[102],"diagnostic":[105,122,151],"journey.":[106,125],"CONCLUSION:":[107],"Our":[108],"study":[109],"sheds":[110],"light":[111],"how":[113],"experience":[120],"By":[126],"highlighting":[127],"recurrent":[128],"themes":[129],"experienced":[130],"by":[131],"families,":[132],"we":[133],"hope":[134],"that":[135],"results":[137],"will":[138],"be":[139],"beneficial":[140],"both":[142],"in":[148],"avoiding":[149],"future":[150],"delay.":[154]},"counts_by_year":[{"year":2026,"cited_by_count":3},{"year":2025,"cited_by_count":2}],"updated_date":"2026-10-16T09:59:22.235173","created_date":"2025-10-10T00:00:00"}