{"id":"https://openalex.org/W1997705017","doi":"https://doi.org/10.1007/s10897-015-9829-5","title":"The Impact of Neurofibromatosis Type 1 on the Health and Wellbeing of Australian Adults","display_name":"The Impact of Neurofibromatosis Type 1 on the Health and Wellbeing of Australian Adults","publication_year":2015,"publication_date":"2015-04-17","ids":{"openalex":"https://openalex.org/W1997705017","doi":"https://doi.org/10.1007/s10897-015-9829-5","mag":"1997705017","pmid":"https://pubmed.ncbi.nlm.nih.gov/25894096"},"language":"en","primary_location":{"id":"doi:10.1007/s10897-015-9829-5","doi":"https://doi.org/10.1007/s10897-015-9829-5","is_oa":true,"landing_page_url":"https://doi.org/10.1007/s10897-015-9829-5","pdf_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1007/s10897-015-9829-5","source":{"id":"https://openalex.org/S99574856","display_name":"Journal of Genetic Counseling","issn_l":"1059-7700","issn":["1059-7700","1573-3599"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-c","doyens","jufo-1","medline","norway-1","poland-70","russia-white-list-3","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 Genetic Counseling","raw_type":"journal-article"},"parent_works":[],"lineage":["https://openalex.org/W1997705017"],"child_works_count":0,"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/10.1007/s10897-015-9829-5","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5060409884","display_name":"Hilda Crawford","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I129604602","display_name":"The University of Sydney","ror":"https://ror.org/0384j8v12","country_code":"AU","type":"education","lineage":["https://openalex.org/I129604602"]},{"id":"https://openalex.org/I2802384191","display_name":"Children's Hospital at Westmead","ror":"https://ror.org/05k0s5494","country_code":"AU","type":"healthcare","lineage":["https://openalex.org/I2802384191"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Hilda A. Crawford","raw_affiliation_strings":["The Institute for Neuroscience and Muscle Research The Children's Hospital at Westmead Locked Bag 4001 Westmead NSW 2145 Australia","The University of Sydney Sydney NSW 2006 Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"The Institute for Neuroscience and Muscle Research The Children's Hospital at Westmead Locked Bag 4001 Westmead NSW 2145 Australia","institution_ids":["https://openalex.org/I2802384191"]},{"raw_affiliation_string":"The University of Sydney Sydney NSW 2006 Australia","institution_ids":["https://openalex.org/I129604602"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5022416032","display_name":"Belinda Barton","orcid":"https://orcid.org/0000-0002-3157-2031","observed_orcids":["https://orcid.org/0000-0002-3157-2031"]},"institutions":[{"id":"https://openalex.org/I129604602","display_name":"The University of Sydney","ror":"https://ror.org/0384j8v12","country_code":"AU","type":"education","lineage":["https://openalex.org/I129604602"]},{"id":"https://openalex.org/I2802384191","display_name":"Children's Hospital at Westmead","ror":"https://ror.org/05k0s5494","country_code":"AU","type":"healthcare","lineage":["https://openalex.org/I2802384191"]}],"countries":["AU"],"is_corresponding":true,"raw_author_name":"Belinda Barton","raw_affiliation_strings":["Children's Hospital Education Research Institute (CHERI) The Children's Hospital at Westmead Locked Bag 4001 Westmead NSW 2145 Australia","The University of Sydney Sydney NSW 2006 Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Children's Hospital Education Research Institute (CHERI) The Children's Hospital at Westmead Locked Bag 4001 Westmead NSW 2145 Australia","institution_ids":["https://openalex.org/I2802384191"]},{"raw_affiliation_string":"The University of Sydney Sydney NSW 2006 Australia","institution_ids":["https://openalex.org/I129604602"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5090700662","display_name":"Meredith Wilson","orcid":"https://orcid.org/0000-0003-2305-2033","observed_orcids":["https://orcid.org/0000-0003-2305-2033"]},"institutions":[{"id":"https://openalex.org/I129604602","display_name":"The University of Sydney","ror":"https://ror.org/0384j8v12","country_code":"AU","type":"education","lineage":["https://openalex.org/I129604602"]},{"id":"https://openalex.org/I2803024705","display_name":"Westmead Hospital","ror":"https://ror.org/04gp5yv64","country_code":"AU","type":"healthcare","lineage":["https://openalex.org/I2803024705","https://openalex.org/I4405259172"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Meredith J. Wilson","raw_affiliation_strings":["Department of Genetic Medicine Westmead Hospital Cnr Hawkesbury Road and Darcy Road Westmead NSW 2145 Australia","Discipline of Genetics University of Sydney Sydney NSW 2006 Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Genetic Medicine Westmead Hospital Cnr Hawkesbury Road and Darcy Road Westmead NSW 2145 Australia","institution_ids":["https://openalex.org/I2803024705"]},{"raw_affiliation_string":"Discipline of Genetics University of Sydney Sydney NSW 2006 Australia","institution_ids":["https://openalex.org/I129604602"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5058176297","display_name":"Yemima D. Berman","orcid":"https://orcid.org/0000-0003-2495-4928","observed_orcids":["https://orcid.org/0000-0003-2495-4928"]},"institutions":[{"id":"https://openalex.org/I129604602","display_name":"The University of Sydney","ror":"https://ror.org/0384j8v12","country_code":"AU","type":"education","lineage":["https://openalex.org/I129604602"]},{"id":"https://openalex.org/I2800079252","display_name":"Royal North Shore Hospital","ror":"https://ror.org/02gs2e959","country_code":"AU","type":"healthcare","lineage":["https://openalex.org/I2800079252"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Yemima Berman","raw_affiliation_strings":["Department of Clinical Genetics Royal North Shore Hospital Reserve Road St Leonards NSW 2065 Australia","Discipline of Medicine University of Sydney Sydney NSW 2006 Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Clinical Genetics Royal North Shore Hospital Reserve Road St Leonards NSW 2065 Australia","institution_ids":["https://openalex.org/I2800079252"]},{"raw_affiliation_string":"Discipline of Medicine University of Sydney Sydney NSW 2006 Australia","institution_ids":["https://openalex.org/I129604602"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5089243892","display_name":"Valerie J. McKelvey\u2010Martin","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I138801177","display_name":"University of Ulster","ror":"https://ror.org/01yp9g959","country_code":"GB","type":"education","lineage":["https://openalex.org/I138801177"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Valerie J. McKelvey\u2010Martin","raw_affiliation_strings":["School of Pharmacy and Pharmaceutical Sciences Ulster University Coleraine Co. Londonderry Northern Ireland BT52 1SA UK","School of Pharmacy and Pharmaceutical Sciences, Ulster University, Coleraine, Co. Londonderry, BT52 1SA, Northern Ireland, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"School of Pharmacy and Pharmaceutical Sciences Ulster University Coleraine Co. Londonderry Northern Ireland BT52 1SA UK","institution_ids":["https://openalex.org/I138801177"]},{"raw_affiliation_string":"School of Pharmacy and Pharmaceutical Sciences, Ulster University, Coleraine, Co. Londonderry, BT52 1SA, Northern Ireland, UK","institution_ids":["https://openalex.org/I138801177"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5059254665","display_name":"Patrick J. Morrison","orcid":"https://orcid.org/0000-0002-2823-1762","observed_orcids":["https://orcid.org/0000-0002-2823-1762","https://orcid.org/0000-0003-0773-7817","https://orcid.org/0000-0003-0920-3405"]},"institutions":[{"id":"https://openalex.org/I138801177","display_name":"University of Ulster","ror":"https://ror.org/01yp9g959","country_code":"GB","type":"education","lineage":["https://openalex.org/I138801177"]},{"id":"https://openalex.org/I2802808109","display_name":"Belfast City Hospital","ror":"https://ror.org/02405mj67","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1289110261","https://openalex.org/I2802808109"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Patrick J. Morrison","raw_affiliation_strings":["Northern Ireland Regional Genetics Service, Department of Medical Genetics Belfast City Hospital Lisburn Road Belfast Northern Ireland BT9 7AB UK","School of Pharmacy and Pharmaceutical Sciences Ulster University Coleraine Co. Londonderry Northern Ireland BT52 1SA UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Northern Ireland Regional Genetics Service, Department of Medical Genetics Belfast City Hospital Lisburn Road Belfast Northern Ireland BT9 7AB UK","institution_ids":["https://openalex.org/I2802808109"]},{"raw_affiliation_string":"School of Pharmacy and Pharmaceutical Sciences Ulster University Coleraine Co. Londonderry Northern Ireland BT52 1SA UK","institution_ids":["https://openalex.org/I138801177"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5015504090","display_name":"Kathryn N. North","orcid":"https://orcid.org/0000-0003-0841-8009","observed_orcids":["https://orcid.org/0000-0003-0841-8009"]},"institutions":[{"id":"https://openalex.org/I1321649718","display_name":"Royal Children's Hospital","ror":"https://ror.org/02rktxt32","country_code":"AU","type":"healthcare","lineage":["https://openalex.org/I1321649718"]},{"id":"https://openalex.org/I4210150290","display_name":"Murdoch Children's Research Institute","ror":"https://ror.org/048fyec77","country_code":"AU","type":"nonprofit","lineage":["https://openalex.org/I4210150290"]}],"countries":["AU"],"is_corresponding":false,"raw_author_name":"Kathryn N. North","raw_affiliation_strings":["Murdoch Childrens Research Institute, Royal Children's Hospital, 50 Flemington Rd, Parkville, VIC, 3062, Australia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Murdoch Childrens Research Institute, Royal Children's Hospital, 50 Flemington Rd, Parkville, VIC, 3062, Australia","institution_ids":["https://openalex.org/I1321649718","https://openalex.org/I4210150290"]}]}],"institutions":[],"countries_distinct_count":2,"institutions_distinct_count":8,"corresponding_author_ids":["https://openalex.org/A5022416032"],"corresponding_institution_ids":["https://openalex.org/I129604602","https://openalex.org/I2802384191"],"apc_list":{"value":3840,"currency":"USD","value_usd":3840},"apc_paid":null,"fwci":2.2458,"has_fulltext":true,"cited_by_count":63,"citation_normalized_percentile":{"value":0.86697462,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":88,"max":99},"biblio":{"volume":"24","issue":"6","first_page":"931","last_page":"944"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11173","display_name":"Neurofibromatosis and Schwannoma Cases","score":0.9994999766349792,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T11173","display_name":"Neurofibromatosis and Schwannoma Cases","score":0.9994999766349792,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"Clinical Neurology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T12331","display_name":"Hereditary Neurological Disorders","score":0.0,"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/T12226","display_name":"Neuroblastoma Research and Treatments","score":0.0,"subfield":{"id":"https://openalex.org/subfields/2730","display_name":"Oncology"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/neurofibromatosis-type-1","display_name":"neurofibromatosis type 1","score":1.0},{"id":"https://openalex.org/keywords/adult-patients","display_name":"adult patients","score":0.47600001096725464},{"id":"https://openalex.org/keywords/health-related-quality-of-life","display_name":"health-related quality of life","score":0.7559999823570251},{"id":"https://openalex.org/keywords/well-being","display_name":"well-being","score":0.9169999957084656},{"id":"https://openalex.org/keywords/learning-difficulties","display_name":"learning difficulties","score":0.9909999966621399},{"id":"https://openalex.org/keywords/reproductive-concerns","display_name":"reproductive concerns","score":0.5059999823570251},{"id":"https://openalex.org/keywords/pain","display_name":"pain","score":0.7649999856948853},{"id":"https://openalex.org/keywords/patient-experience","display_name":"patient experience","score":0.550000011920929},{"id":"https://openalex.org/keywords/disease-severity","display_name":"disease severity","score":0.4690000116825104},{"id":"https://openalex.org/keywords/patient-care-recommendations","display_name":"patient care recommendations","score":0.492000013589859}],"concepts":[{"id":"https://openalex.org/C2778984943","wikidata":"https://www.wikidata.org/wiki/Q847605","display_name":"Neurofibromatosis","level":2,"score":0.7083757519721985},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.6590430736541748},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.6085551977157593},{"id":"https://openalex.org/C156325361","wikidata":"https://www.wikidata.org/wiki/Q1152864","display_name":"Grounded theory","level":3,"score":0.5485795140266418},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.5335911512374878},{"id":"https://openalex.org/C138816342","wikidata":"https://www.wikidata.org/wiki/Q189603","display_name":"Public health","level":2,"score":0.5332146883010864},{"id":"https://openalex.org/C12713177","wikidata":"https://www.wikidata.org/wiki/Q1900281","display_name":"Perspective (graphical)","level":2,"score":0.5012698173522949},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.4629088342189789},{"id":"https://openalex.org/C201903717","wikidata":"https://www.wikidata.org/wiki/Q1778788","display_name":"Cohort study","level":2,"score":0.4610288739204407},{"id":"https://openalex.org/C170932241","wikidata":"https://www.wikidata.org/wiki/Q411610","display_name":"Neurofibromin 1","level":3,"score":0.45685675740242004},{"id":"https://openalex.org/C72563966","wikidata":"https://www.wikidata.org/wiki/Q1303415","display_name":"Cohort","level":2,"score":0.4478524327278137},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.3524705767631531},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.3353848457336426},{"id":"https://openalex.org/C138496976","wikidata":"https://www.wikidata.org/wiki/Q175002","display_name":"Developmental psychology","level":1,"score":0.3331344723701477},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.1420915424823761},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.1269250512123108},{"id":"https://openalex.org/C36289849","wikidata":"https://www.wikidata.org/wiki/Q34749","display_name":"Social science","level":1,"score":0.0},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.0},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.0},{"id":"https://openalex.org/C154945302","wikidata":"https://www.wikidata.org/wiki/Q11660","display_name":"Artificial intelligence","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D000328","descriptor_name":"Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D001294","descriptor_name":"Attitude to Health","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D001315","descriptor_name":"Australia","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":"D006304","descriptor_name":"Health Status","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"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":"D009456","descriptor_name":"Neurofibromatosis 1","qualifier_ui":"Q000150","qualifier_name":"complications","is_major_topic":false},{"descriptor_ui":"D009456","descriptor_name":"Neurofibromatosis 1","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D011788","descriptor_name":"Quality of Life","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D012649","descriptor_name":"Self Concept","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D012919","descriptor_name":"Social Behavior","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":2,"locations":[{"id":"doi:10.1007/s10897-015-9829-5","doi":"https://doi.org/10.1007/s10897-015-9829-5","is_oa":true,"landing_page_url":"https://doi.org/10.1007/s10897-015-9829-5","pdf_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1007/s10897-015-9829-5","source":{"id":"https://openalex.org/S99574856","display_name":"Journal of Genetic Counseling","issn_l":"1059-7700","issn":["1059-7700","1573-3599"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-c","doyens","jufo-1","medline","norway-1","poland-70","russia-white-list-3","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 Genetic Counseling","raw_type":"journal-article"},{"id":"pmid:25894096","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/25894096","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 genetic counseling","raw_type":"Journal Article"}],"best_oa_location":{"id":"doi:10.1007/s10897-015-9829-5","doi":"https://doi.org/10.1007/s10897-015-9829-5","is_oa":true,"landing_page_url":"https://doi.org/10.1007/s10897-015-9829-5","pdf_url":"https://onlinelibrary.wiley.com/doi/pdfdirect/10.1007/s10897-015-9829-5","source":{"id":"https://openalex.org/S99574856","display_name":"Journal of Genetic Counseling","issn_l":"1059-7700","issn":["1059-7700","1573-3599"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-c","doyens","jufo-1","medline","norway-1","poland-70","russia-white-list-3","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 Genetic Counseling","raw_type":"journal-article"},"sustainable_development_goals":[{"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3","score":0.9940000176429749}],"study_designs":[],"awards":[],"funders":[{"id":"https://openalex.org/F4320320859","display_name":"Ulster University","ror":"https://ror.org/01yp9g959"}],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W1997705017.pdf","grobid_xml":"https://content.openalex.org/works/W1997705017.grobid-xml"},"referenced_works_count":67,"referenced_works":["https://openalex.org/W107054770","https://openalex.org/W197886191","https://openalex.org/W409344806","https://openalex.org/W616886222","https://openalex.org/W627471862","https://openalex.org/W629116801","https://openalex.org/W994110624","https://openalex.org/W1503338063","https://openalex.org/W1556049736","https://openalex.org/W1594630599","https://openalex.org/W1605824561","https://openalex.org/W1636903271","https://openalex.org/W1972795616","https://openalex.org/W1974290681","https://openalex.org/W1978140725","https://openalex.org/W1984227198","https://openalex.org/W1985047628","https://openalex.org/W1985317924","https://openalex.org/W1995399706","https://openalex.org/W1997887695","https://openalex.org/W2002090180","https://openalex.org/W2003417991","https://openalex.org/W2018433255","https://openalex.org/W2025130157","https://openalex.org/W2028600766","https://openalex.org/W2029744372","https://openalex.org/W2035754023","https://openalex.org/W2037352553","https://openalex.org/W2045886036","https://openalex.org/W2049451941","https://openalex.org/W2051465756","https://openalex.org/W2057677742","https://openalex.org/W2064365947","https://openalex.org/W2064456271","https://openalex.org/W2066278568","https://openalex.org/W2067303648","https://openalex.org/W2069713570","https://openalex.org/W2070340242","https://openalex.org/W2092506282","https://openalex.org/W2092864149","https://openalex.org/W2094627696","https://openalex.org/W2103308829","https://openalex.org/W2105248638","https://openalex.org/W2105518445","https://openalex.org/W2113070906","https://openalex.org/W2124350134","https://openalex.org/W2125712944","https://openalex.org/W2128496796","https://openalex.org/W2130401543","https://openalex.org/W2131532433","https://openalex.org/W2142889737","https://openalex.org/W2148694444","https://openalex.org/W2155817714","https://openalex.org/W2164030274","https://openalex.org/W2169474932","https://openalex.org/W2170419506","https://openalex.org/W2339374196","https://openalex.org/W2412842628","https://openalex.org/W2415220657","https://openalex.org/W2415514341","https://openalex.org/W2473178453","https://openalex.org/W2497721881","https://openalex.org/W3036997304","https://openalex.org/W4235278727","https://openalex.org/W4248578796","https://openalex.org/W4292528167","https://openalex.org/W4299926503"],"related_works":["https://openalex.org/W2291791806","https://openalex.org/W2766478374","https://openalex.org/W4409984467","https://openalex.org/W2029744372","https://openalex.org/W4310205537","https://openalex.org/W2802715167","https://openalex.org/W4366190464","https://openalex.org/W2069713570","https://openalex.org/W7135828814","https://openalex.org/W178299828"],"abstract_inverted_index":{"The":[0],"complications":[1],"of":[2,16,28,57,101,111,127,137,149,164,167,178],"neurofibromatosis":[3],"type":[4],"1":[5],"(NF1)":[6],"are":[7],"widespread,":[8],"unpredictable":[9],"and":[10,12,60,77,120,171],"variable":[11],"each":[13],"person's":[14],"experience":[15],"this":[17],"disorder":[18],"is":[19],"unique.":[20],"However,":[21],"few":[22],"studies":[23],"have":[24],"addressed":[25],"the":[26,40,68,109,125,132,141,150,165,176],"impact":[27,166],"NF1":[29,44,72,89,113,128,138,168],"from":[30],"an":[31],"individual's":[32],"perspective.":[33],"This":[34,158],"qualitative":[35],"study":[36,159],"aims":[37],"to":[38,114],"identify":[39],"ways":[41,69],"in":[42,63,70,94,169],"which":[43,71],"impacts":[45,90],"upon":[46,74,91],"affected":[47,92,145],"Australian":[48],"adults.":[49],"Sixty":[50],"adults":[51,93,146],"with":[52,54],"NF1,":[53],"a":[55,64,135],"range":[56],"disease":[58,102,118],"severity":[59],"visibility":[61],"participated":[62],"semi-structured":[65],"interview":[66],"about":[67,108],"impacted":[73],"their":[75],"life":[76],"health.":[78],"Data":[79],"were":[80],"analyzed":[81],"using":[82],"grounded":[83],"theory":[84],"methodology.":[85],"Results":[86],"indicated":[87],"that":[88,129],"five":[95],"major":[96],"ways:":[97],"1)":[98],"cosmetic":[99],"burden":[100],"2)":[103],"learning":[104],"difficulties":[105],"3)":[106],"concerns":[107,139,152],"risk":[110],"passing":[112],"offspring":[115],"4)":[116],"uncertain":[117],"progression,":[119],"5)":[121],"pain.":[122],"Participants":[123],"identified":[124],"aspects":[126],"bothered":[130],"them":[131],"most,":[133],"creating":[134],"hierarchy":[136],"within":[140],"cohort.":[142],"Importantly,":[143],"mildly":[144],"shared":[147],"many":[148],"same":[151],"as":[153],"those":[154],"more":[155],"severely":[156],"affected.":[157],"enhances":[160],"our":[161],"current":[162],"understanding":[163],"adulthood,":[170],"augments":[172],"existing":[173],"recommendations":[174],"for":[175],"care":[177],"these":[179],"patients.":[180]},"counts_by_year":[{"year":2026,"cited_by_count":12},{"year":2025,"cited_by_count":10},{"year":2024,"cited_by_count":8},{"year":2023,"cited_by_count":6},{"year":2022,"cited_by_count":4},{"year":2021,"cited_by_count":7},{"year":2020,"cited_by_count":1},{"year":2019,"cited_by_count":3},{"year":2018,"cited_by_count":4},{"year":2017,"cited_by_count":5},{"year":2016,"cited_by_count":2}],"updated_date":"2026-11-10T11:39:43.021295","created_date":"2016-06-24T00:00:00"}