{"id":"https://openalex.org/W4412371506","doi":"https://doi.org/10.1177/13591053251343023","title":"Qualitative aspects of pain in children and adults with neurofibromatosis type 1 and plexiform neurofibromas: Causes, consequences, and communication","display_name":"Qualitative aspects of pain in children and adults with neurofibromatosis type 1 and plexiform neurofibromas: Causes, consequences, and communication","publication_year":2025,"publication_date":"2025-07-13","ids":{"openalex":"https://openalex.org/W4412371506","doi":"https://doi.org/10.1177/13591053251343023","pmid":"https://pubmed.ncbi.nlm.nih.gov/40652358"},"language":"en","primary_location":{"id":"doi:10.1177/13591053251343023","doi":"https://doi.org/10.1177/13591053251343023","is_oa":false,"landing_page_url":"https://doi.org/10.1177/13591053251343023","pdf_url":null,"source":{"id":"https://openalex.org/S62445580","display_name":"Journal of Health Psychology","issn_l":"1359-1053","issn":["1359-1053","1461-7277"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-d","doyens","erih-plus","jufo-1","ki-jl-1","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320017","host_organization_name":"SAGE Publishing","host_organization_lineage":["https://openalex.org/P4310320017"],"host_organization_lineage_names":["SAGE Publishing"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Health Psychology","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":false,"oa_status":"closed","oa_url":null,"any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5064117103","display_name":"Melissa Baker","orcid":"https://orcid.org/0000-0001-7064-5881","observed_orcids":["https://orcid.org/0000-0001-7064-5881"]},"institutions":[{"id":"https://openalex.org/I1299303238","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238"]},{"id":"https://openalex.org/I203088144","display_name":"Nova Southeastern University","ror":"https://ror.org/042bbge36","country_code":"US","type":"education","lineage":["https://openalex.org/I203088144"]},{"id":"https://openalex.org/I4210140884","display_name":"National Cancer Institute","ror":"https://ror.org/040gcmg81","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210140884"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Melissa Baker","raw_affiliation_strings":["National Cancer Institute, National Institutes of Health, USA","Nova Southeastern University, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"National Cancer Institute, National Institutes of Health, USA","institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I4210140884"]},{"raw_affiliation_string":"Nova Southeastern University, USA","institution_ids":["https://openalex.org/I203088144"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5048681548","display_name":"Staci C. Martin","orcid":"https://orcid.org/0000-0002-9342-4173","observed_orcids":["https://orcid.org/0000-0002-9342-4173"]},"institutions":[{"id":"https://openalex.org/I1299303238","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238"]},{"id":"https://openalex.org/I4210140884","display_name":"National Cancer Institute","ror":"https://ror.org/040gcmg81","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210140884"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Staci Martin","raw_affiliation_strings":["National Cancer Institute, National Institutes of Health, USA"],"raw_orcid":"https://orcid.org/0000-0002-9342-4173","affiliations":[{"raw_affiliation_string":"National Cancer Institute, National Institutes of Health, USA","institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I4210140884"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5062645379","display_name":"Nour Al Ghriwati","orcid":"https://orcid.org/0000-0001-5065-545X","observed_orcids":["https://orcid.org/0000-0001-5065-545X"]},"institutions":[{"id":"https://openalex.org/I4210130649","display_name":"Frederick National Laboratory for Cancer Research","ror":"https://ror.org/03v6m3209","country_code":"US","type":"facility","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210130649","https://openalex.org/I4210140884"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Nour Al Ghriwati","raw_affiliation_strings":["Frederick National Laboratory for Cancer Research, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Frederick National Laboratory for Cancer Research, USA","institution_ids":["https://openalex.org/I4210130649"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5101306243","display_name":"Paige Little","orcid":"https://orcid.org/0009-0001-1888-1585","observed_orcids":["https://orcid.org/0009-0001-1888-1585"]},"institutions":[{"id":"https://openalex.org/I1299303238","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238"]},{"id":"https://openalex.org/I4210140884","display_name":"National Cancer Institute","ror":"https://ror.org/040gcmg81","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210140884"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Paige Little","raw_affiliation_strings":["National Cancer Institute, National Institutes of Health, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"National Cancer Institute, National Institutes of Health, USA","institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I4210140884"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5042918774","display_name":"Kari L. Struemph","orcid":"https://orcid.org/0000-0003-4148-7911","observed_orcids":["https://orcid.org/0000-0003-4148-7911"]},"institutions":[{"id":"https://openalex.org/I4210128618","display_name":"University of Kansas Medical Center","ror":"https://ror.org/036c9yv20","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210128618"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Kari Struemph","raw_affiliation_strings":["University of Kansas Medical Center, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Kansas Medical Center, USA","institution_ids":["https://openalex.org/I4210128618"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5060029036","display_name":"Tia Tyndal","orcid":"https://orcid.org/0000-0001-7412-9614","observed_orcids":["https://orcid.org/0000-0001-7412-9614"]},"institutions":[{"id":"https://openalex.org/I1299303238","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238"]},{"id":"https://openalex.org/I4210140884","display_name":"National Cancer Institute","ror":"https://ror.org/040gcmg81","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210140884"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Tia Tyndal","raw_affiliation_strings":["National Cancer Institute, National Institutes of Health, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"National Cancer Institute, National Institutes of Health, USA","institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I4210140884"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5003635948","display_name":"James H. Tonsgard","orcid":"https://orcid.org/0000-0001-6678-6884","observed_orcids":["https://orcid.org/0000-0001-6678-6884"]},"institutions":[{"id":"https://openalex.org/I40347166","display_name":"University of Chicago","ror":"https://ror.org/024mw5h28","country_code":"US","type":"education","lineage":["https://openalex.org/I40347166"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"James Tonsgard","raw_affiliation_strings":["University of Chicago Pritzker School of Medicine, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Chicago Pritzker School of Medicine, USA","institution_ids":["https://openalex.org/I40347166"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5028766984","display_name":"Cynthia MacKenzie","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I40347166","display_name":"University of Chicago","ror":"https://ror.org/024mw5h28","country_code":"US","type":"education","lineage":["https://openalex.org/I40347166"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Cynthia MacKenzie","raw_affiliation_strings":["University of Chicago Pritzker School of Medicine, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Chicago Pritzker School of Medicine, USA","institution_ids":["https://openalex.org/I40347166"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5065177203","display_name":"Elizabeth K. Schorry","orcid":"https://orcid.org/0000-0002-8306-3490","observed_orcids":["https://orcid.org/0000-0002-8306-3490"]},"institutions":[{"id":"https://openalex.org/I1285204247","display_name":"Cincinnati Children's Hospital Medical Center","ror":"https://ror.org/01hcyya48","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1285204247"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Elizabeth K Schorry","raw_affiliation_strings":["Cincinnati Children\u2019s Hospital Medical Center, USA","Cincinnati Children's Hospital Medical Center, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Cincinnati Children\u2019s Hospital Medical Center, USA","institution_ids":["https://openalex.org/I1285204247"]},{"raw_affiliation_string":"Cincinnati Children's Hospital Medical Center, USA","institution_ids":["https://openalex.org/I1285204247"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5058625072","display_name":"Karin Scheetz Walsh","orcid":"https://orcid.org/0000-0001-9637-2164","observed_orcids":["https://orcid.org/0000-0001-9637-2164"]},"institutions":[{"id":"https://openalex.org/I1336742384","display_name":"Children's National","ror":"https://ror.org/03wa2q724","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1336742384"]},{"id":"https://openalex.org/I193531525","display_name":"George Washington University","ror":"https://ror.org/00y4zzh67","country_code":"US","type":"education","lineage":["https://openalex.org/I193531525"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Karin S Walsh","raw_affiliation_strings":["Children\u2019s National Hospital, USA","George Washington University School of Medicine, USA","Children's National Hospital, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Children\u2019s National Hospital, USA","institution_ids":["https://openalex.org/I1336742384"]},{"raw_affiliation_string":"George Washington University School of Medicine, USA","institution_ids":["https://openalex.org/I193531525"]},{"raw_affiliation_string":"Children's National Hospital, USA","institution_ids":["https://openalex.org/I1336742384"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5065611220","display_name":"Pamela L. Wolters","orcid":"https://orcid.org/0000-0001-9319-6281","observed_orcids":["https://orcid.org/0000-0001-9319-6281"]},"institutions":[{"id":"https://openalex.org/I1299303238","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238"]},{"id":"https://openalex.org/I4210140884","display_name":"National Cancer Institute","ror":"https://ror.org/040gcmg81","country_code":"US","type":"government","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210140884"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Pamela L. Wolters","raw_affiliation_strings":["National Cancer Institute, National Institutes of Health, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"National Cancer Institute, National Institutes of Health, USA","institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I4210140884"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":9,"corresponding_author_ids":["https://openalex.org/A5048681548"],"corresponding_institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I4210140884"],"apc_list":{"value":3650,"currency":"USD","value_usd":3650},"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":{"value":0.19966832,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":null,"biblio":{"volume":"31","issue":"4","first_page":"1562","last_page":"1574"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11173","display_name":"Neurofibromatosis and Schwannoma Cases","score":0.8765000104904175,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"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":0.8765000104904175,"subfield":{"id":"https://openalex.org/subfields/2728","display_name":"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/T11292","display_name":"Pediatric Pain Management Techniques","score":0.11509999632835388,"subfield":{"id":"https://openalex.org/subfields/2735","display_name":"Pediatrics, Perinatology and Child Health"},"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/T11141","display_name":"Childhood Cancer Survivors' Quality of Life","score":0.0012000000569969416,"subfield":{"id":"https://openalex.org/subfields/2735","display_name":"Pediatrics, Perinatology and Child Health"},"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":0.9990000128746033},{"id":"https://openalex.org/keywords/plexiform-neurofibroma","display_name":"plexiform neurofibroma","score":0.9789999723434448},{"id":"https://openalex.org/keywords/pain-experience","display_name":"pain experience","score":0.8500000238418579},{"id":"https://openalex.org/keywords/pain-triggers","display_name":"pain triggers","score":0.7580000162124634},{"id":"https://openalex.org/keywords/psychosocial-impact-of-pain","display_name":"psychosocial impact of pain","score":0.921999990940094},{"id":"https://openalex.org/keywords/parent-child-communication","display_name":"parent-child communication","score":0.9160000085830688},{"id":"https://openalex.org/keywords/pain-coping","display_name":"pain coping","score":0.7490000128746033},{"id":"https://openalex.org/keywords/children-and-adults","display_name":"children and adults","score":0.6029999852180481},{"id":"https://openalex.org/keywords/pain-description","display_name":"pain description","score":0.32100000977516174}],"concepts":[{"id":"https://openalex.org/C2778984943","wikidata":"https://www.wikidata.org/wiki/Q847605","display_name":"Neurofibromatosis","level":2,"score":0.8648978471755981},{"id":"https://openalex.org/C150966472","wikidata":"https://www.wikidata.org/wiki/Q3410145","display_name":"Psychosocial","level":2,"score":0.7634758353233337},{"id":"https://openalex.org/C2780733359","wikidata":"https://www.wikidata.org/wiki/Q331769","display_name":"Mood","level":2,"score":0.549306333065033},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.527435839176178},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.5273528695106506},{"id":"https://openalex.org/C74196892","wikidata":"https://www.wikidata.org/wiki/Q7781188","display_name":"Thematic analysis","level":3,"score":0.5272963047027588},{"id":"https://openalex.org/C112143881","wikidata":"https://www.wikidata.org/wiki/Q7124833","display_name":"Pain catastrophizing","level":3,"score":0.49035215377807617},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.3822069764137268},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.38165634870529175},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.3799428343772888},{"id":"https://openalex.org/C2781118164","wikidata":"https://www.wikidata.org/wiki/Q1088113","display_name":"Chronic pain","level":2,"score":0.314278244972229},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.2965567708015442},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.0},{"id":"https://openalex.org/C126838900","wikidata":"https://www.wikidata.org/wiki/Q77604","display_name":"Radiology","level":1,"score":0.0},{"id":"https://openalex.org/C36289849","wikidata":"https://www.wikidata.org/wiki/Q34749","display_name":"Social science","level":1,"score":0.0}],"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":"D000368","descriptor_name":"Aged","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":"D000369","descriptor_name":"Aged, 80 and over","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000369","descriptor_name":"Aged, 80 and over","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":"D003142","descriptor_name":"Communication","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D003142","descriptor_name":"Communication","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"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":"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":"D009456","descriptor_name":"Neurofibromatosis 1","qualifier_ui":"Q000150","qualifier_name":"complications","is_major_topic":true},{"descriptor_ui":"D009456","descriptor_name":"Neurofibromatosis 1","qualifier_ui":"Q000150","qualifier_name":"complications","is_major_topic":true},{"descriptor_ui":"D009456","descriptor_name":"Neurofibromatosis 1","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D009456","descriptor_name":"Neurofibromatosis 1","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D010146","descriptor_name":"Pain","qualifier_ui":"Q000209","qualifier_name":"etiology","is_major_topic":true},{"descriptor_ui":"D010146","descriptor_name":"Pain","qualifier_ui":"Q000209","qualifier_name":"etiology","is_major_topic":true},{"descriptor_ui":"D010146","descriptor_name":"Pain","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D010146","descriptor_name":"Pain","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D010287","descriptor_name":"Parent-Child Relations","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010287","descriptor_name":"Parent-Child Relations","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D017144","descriptor_name":"Focus Groups","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D017144","descriptor_name":"Focus Groups","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D018318","descriptor_name":"Neurofibroma, Plexiform","qualifier_ui":"Q000150","qualifier_name":"complications","is_major_topic":true},{"descriptor_ui":"D018318","descriptor_name":"Neurofibroma, Plexiform","qualifier_ui":"Q000150","qualifier_name":"complications","is_major_topic":true},{"descriptor_ui":"D018318","descriptor_name":"Neurofibroma, Plexiform","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D018318","descriptor_name":"Neurofibroma, Plexiform","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},{"descriptor_ui":"D055815","descriptor_name":"Young Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D055815","descriptor_name":"Young Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":2,"locations":[{"id":"doi:10.1177/13591053251343023","doi":"https://doi.org/10.1177/13591053251343023","is_oa":false,"landing_page_url":"https://doi.org/10.1177/13591053251343023","pdf_url":null,"source":{"id":"https://openalex.org/S62445580","display_name":"Journal of Health Psychology","issn_l":"1359-1053","issn":["1359-1053","1461-7277"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-d","doyens","erih-plus","jufo-1","ki-jl-1","medline","norway-1","poland-70","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320017","host_organization_name":"SAGE Publishing","host_organization_lineage":["https://openalex.org/P4310320017"],"host_organization_lineage_names":["SAGE Publishing"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Health Psychology","raw_type":"journal-article"},{"id":"pmid:40652358","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/40652358","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 health psychology","raw_type":"Journal Article"}],"best_oa_location":null,"sustainable_development_goals":[{"score":1.0,"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being"}],"sustainable_development_goals_aurora":[],"study_designs":[],"awards":[{"id":"https://openalex.org/G4637239529","display_name":"Pilot Study of Factors Impacting Medication Adherence in Children, Adolescents, and Adults with Neurofibromatosis Type 1 (NF1) on Clinical Treatment Trials","funder_award_id":"182007","funder_id":"https://openalex.org/F4320333709","funder_display_name":"Neurofibromatosis Therapeutic Acceleration Program"}],"funders":[{"id":"https://openalex.org/F4320332161","display_name":"National Institutes of Health","ror":"https://ror.org/01cwqze88"},{"id":"https://openalex.org/F4320333282","display_name":"School of Medicine, Johns Hopkins University","ror":null},{"id":"https://openalex.org/F4320333709","display_name":"Neurofibromatosis Therapeutic Acceleration Program","ror":"https://ror.org/01359dk79"}],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":41,"referenced_works":["https://openalex.org/W1817577608","https://openalex.org/W1942148246","https://openalex.org/W1980341922","https://openalex.org/W2004646775","https://openalex.org/W2046961122","https://openalex.org/W2069557978","https://openalex.org/W2087744205","https://openalex.org/W2097131858","https://openalex.org/W2157937764","https://openalex.org/W2189654888","https://openalex.org/W2254182258","https://openalex.org/W2285241077","https://openalex.org/W2432369501","https://openalex.org/W2508904191","https://openalex.org/W2526675662","https://openalex.org/W2591172233","https://openalex.org/W2616760840","https://openalex.org/W2766117261","https://openalex.org/W2775490589","https://openalex.org/W2793890464","https://openalex.org/W2801840800","https://openalex.org/W2885965136","https://openalex.org/W2897969169","https://openalex.org/W2902901926","https://openalex.org/W2914422384","https://openalex.org/W2969777509","https://openalex.org/W2971921855","https://openalex.org/W3000784488","https://openalex.org/W3010907970","https://openalex.org/W3023639742","https://openalex.org/W3092688163","https://openalex.org/W3093223973","https://openalex.org/W3163728162","https://openalex.org/W3209974365","https://openalex.org/W4235138953","https://openalex.org/W4280568932","https://openalex.org/W4307291117","https://openalex.org/W4377084754","https://openalex.org/W4386837964","https://openalex.org/W4409971483","https://openalex.org/W7074032545"],"related_works":["https://openalex.org/W2389017212","https://openalex.org/W2411243649","https://openalex.org/W1984608671","https://openalex.org/W2412849376","https://openalex.org/W2473970815","https://openalex.org/W2048140690","https://openalex.org/W2142078240","https://openalex.org/W2110815103","https://openalex.org/W2101962451","https://openalex.org/W2003322706"],"abstract_inverted_index":{"Neurofibromatosis":[0],"type":[1],"1":[2],"(NF1)":[3],"often":[4],"manifests":[5],"in":[6,45,88],"painful":[7],"plexiform":[8],"neurofibroma":[9],"(pNF).":[10],"While":[11],"numerous":[12],"quantitative":[13],"studies":[14],"have":[15],"documented":[16],"pNF-related":[17,30,55,92,121],"pain,":[18,71,122],"the":[19,29,79,117,131],"current":[20],"qualitative":[21],"study":[22],"sought":[23],"to":[24,96,112],"investigate":[25],"individual":[26],"aspects":[27],"of":[28,59,63,70,91,120,135],"pain":[31,64,66,72,93,97,106,114,137],"experience.":[32],"In":[33],"this":[34],"multi-site":[35],"study,":[36],"56":[37],"individuals":[38,85,140],"with":[39,94,147],"NF1,":[40],"aged":[41],"6-86":[42],"years,":[43],"participated":[44],"a":[46,123],"focus":[47],"group":[48],"or":[49],"interview":[50],"regarding":[51],"their":[52,89,148],"NF1":[53],"and":[54,75,100,110,126,138,141,145],"pain.":[56,81],"Thematic":[57],"analysis":[58],"transcripts":[60],"revealed":[61],"themes":[62],"descriptions,":[65],"triggers,":[67],"psychosocial":[68],"impacts":[69,108],"relief":[73],"behaviors,":[74],"parent-child":[76,113],"communication":[77],"about":[78,144],"child's":[80],"Findings":[82],"indicated":[83],"that":[84],"vary":[86],"widely":[87],"descriptions":[90],"respect":[95],"onset,":[98],"duration,":[99],"intensity.":[101],"Additional":[102],"findings":[103],"detailed":[104],"how":[105],"negatively":[107],"mood":[109],"barriers":[111],"communication.":[115],"Given":[116],"widespread":[118],"prevalence":[119],"combined":[124],"pharmacological":[125],"psychological":[127],"approach":[128],"may":[129],"offer":[130],"most":[132],"effective":[133],"means":[134],"ameliorating":[136],"helping":[139],"families":[142],"communicate":[143],"cope":[146],"symptoms.":[149]},"counts_by_year":[],"updated_date":"2026-10-08T09:06:37.294493","created_date":"2025-10-10T00:00:00"}