{"id":"https://openalex.org/W4389537571","doi":"https://doi.org/10.6004/jnccn.2023.7067","title":"What Constitutes Quality of Life? Perspectives of Adolescents and Young Adults With Advanced Cancer","display_name":"What Constitutes Quality of Life? Perspectives of Adolescents and Young Adults With Advanced Cancer","publication_year":2023,"publication_date":"2023-12-01","ids":{"openalex":"https://openalex.org/W4389537571","doi":"https://doi.org/10.6004/jnccn.2023.7067","pmid":"https://pubmed.ncbi.nlm.nih.gov/38081124","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/11128290"},"language":"en","primary_location":{"id":"doi:10.6004/jnccn.2023.7067","doi":"https://doi.org/10.6004/jnccn.2023.7067","is_oa":true,"landing_page_url":"https://doi.org/10.6004/jnccn.2023.7067","pdf_url":"https://jnccn.org/downloadpdf/view/journals/jnccn/21/12/article-p1243.pdf","source":{"id":"https://openalex.org/S935620192","display_name":"Journal of the National Comprehensive Cancer Network","issn_l":"1540-1405","issn":["1540-1405","1540-1413"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-2","ki-jl-1","medline","norway-1","poland-140","russia-white-list-1"],"host_organization":"https://openalex.org/P4324004213","host_organization_name":"National Comprehensive Cancer","host_organization_lineage":["https://openalex.org/P4324004213"],"host_organization_lineage_names":["National Comprehensive Cancer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the National Comprehensive Cancer Network","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"bronze","oa_url":"https://jnccn.org/downloadpdf/view/journals/jnccn/21/12/article-p1243.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5023560253","display_name":"Jane Hinkle","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I136199984","display_name":"Harvard University","ror":"https://ror.org/03vek6s52","country_code":"US","type":"education","lineage":["https://openalex.org/I136199984"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jane Hinkle","raw_affiliation_strings":["Harvard T.H. Chan School of Public Health, Boston, Massachusetts"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Harvard T.H. Chan School of Public Health, Boston, Massachusetts","institution_ids":["https://openalex.org/I136199984"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5089224710","display_name":"Lori S. Wiener","orcid":"https://orcid.org/0000-0002-9573-8870","observed_orcids":["https://orcid.org/0000-0002-9573-8870"]},"institutions":[{"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":"Lori Wiener","raw_affiliation_strings":["Psychosocial Support and Research Program, National Cancer Institute, Bethesda, Maryland"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Psychosocial Support and Research Program, National Cancer Institute, Bethesda, Maryland","institution_ids":["https://openalex.org/I4210140884"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5051899790","display_name":"Andrea Altschuler","orcid":"https://orcid.org/0000-0003-3880-0735","observed_orcids":["https://orcid.org/0000-0003-3880-0735"]},"institutions":[{"id":"https://openalex.org/I1343052199","display_name":"Kaiser Permanente","ror":"https://ror.org/00t60zh31","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1343052199"]},{"id":"https://openalex.org/I4405284138","display_name":"Kaiser Permanente Northern California","ror":"https://ror.org/0302f6d89","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1343052199","https://openalex.org/I4405284138"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Andrea Altschuler","raw_affiliation_strings":["Division of Research, Kaiser Permanente Northern California, Oakland, California"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Division of Research, Kaiser Permanente Northern California, Oakland, California","institution_ids":["https://openalex.org/I1343052199","https://openalex.org/I4405284138"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5052147164","display_name":"Katharine E. Brock","orcid":"https://orcid.org/0000-0001-6125-3077","observed_orcids":["https://orcid.org/0000-0001-6125-3077"]},"institutions":[{"id":"https://openalex.org/I4210146983","display_name":"Children's Healthcare of Atlanta","ror":"https://ror.org/050fhx250","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210146983"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Katharine E. Brock","raw_affiliation_strings":["Aflac Cancer and Blood Disorders Center at Children\u2032s Healthcare of Atlanta, Atlanta, Georgia"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Aflac Cancer and Blood Disorders Center at Children\u2032s Healthcare of Atlanta, Atlanta, Georgia","institution_ids":["https://openalex.org/I4210146983"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5044082684","display_name":"Mallory Casperson","orcid":"https://orcid.org/0009-0005-8405-6021","observed_orcids":["https://orcid.org/0009-0005-8405-6021"]},"institutions":[{"id":"https://openalex.org/I4405286699","display_name":"Cactus Cancer Society","ror":"https://ror.org/02v1ck469","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I4405286699"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Mallory Casperson","raw_affiliation_strings":["Divisions of Pediatric Oncology and Palliative Care, Cactus Cancer Society, Oakland, California"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Divisions of Pediatric Oncology and Palliative Care, Cactus Cancer Society, Oakland, California","institution_ids":["https://openalex.org/I4405286699"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5024734562","display_name":"Chun Chao","orcid":"https://orcid.org/0000-0002-6072-4954","observed_orcids":["https://orcid.org/0000-0002-6072-4954"]},"institutions":[{"id":"https://openalex.org/I1343052199","display_name":"Kaiser Permanente","ror":"https://ror.org/00t60zh31","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1343052199"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Chun R. Chao","raw_affiliation_strings":["Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, California"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Research and Evaluation, Kaiser Permanente Southern California, Pasadena, California","institution_ids":["https://openalex.org/I1343052199"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5035968229","display_name":"Lauren Fisher","orcid":"https://orcid.org/0000-0002-4063-6164","observed_orcids":["https://orcid.org/0000-0002-4063-6164"]},"institutions":[{"id":"https://openalex.org/I4210117453","display_name":"Dana-Farber Cancer Institute","ror":"https://ror.org/02jzgtq86","country_code":"US","type":"facility","lineage":["https://openalex.org/I4210117453"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Lauren Fisher","raw_affiliation_strings":["Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts","institution_ids":["https://openalex.org/I4210117453"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5031698839","display_name":"Lawrence H. Kushi","orcid":"https://orcid.org/0000-0001-9136-1175","observed_orcids":["https://orcid.org/0000-0001-9136-1175"]},"institutions":[{"id":"https://openalex.org/I1343052199","display_name":"Kaiser Permanente","ror":"https://ror.org/00t60zh31","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1343052199"]},{"id":"https://openalex.org/I4405284138","display_name":"Kaiser Permanente Northern California","ror":"https://ror.org/0302f6d89","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1343052199","https://openalex.org/I4405284138"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Lawrence H. Kushi","raw_affiliation_strings":["Division of Research, Kaiser Permanente Northern California, Oakland, California"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Division of Research, Kaiser Permanente Northern California, Oakland, California","institution_ids":["https://openalex.org/I1343052199","https://openalex.org/I4405284138"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5038516771","display_name":"Joshua R. Lakin","orcid":"https://orcid.org/0000-0002-7659-6512","observed_orcids":["https://orcid.org/0000-0002-7659-6512"]},"institutions":[{"id":"https://openalex.org/I4210117453","display_name":"Dana-Farber Cancer Institute","ror":"https://ror.org/02jzgtq86","country_code":"US","type":"facility","lineage":["https://openalex.org/I4210117453"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Joshua R. Lakin","raw_affiliation_strings":["Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts","institution_ids":["https://openalex.org/I4210117453"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5025414741","display_name":"Anna Lefebvre","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210117453","display_name":"Dana-Farber Cancer Institute","ror":"https://ror.org/02jzgtq86","country_code":"US","type":"facility","lineage":["https://openalex.org/I4210117453"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Anna Lefebvre","raw_affiliation_strings":["Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts","institution_ids":["https://openalex.org/I4210117453"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5001561032","display_name":"Corey M. Schwartz","orcid":"https://orcid.org/0009-0004-2542-3461","observed_orcids":["https://orcid.org/0009-0004-2542-3461"]},"institutions":[{"id":"https://openalex.org/I1343052199","display_name":"Kaiser Permanente","ror":"https://ror.org/00t60zh31","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1343052199"]},{"id":"https://openalex.org/I4405284138","display_name":"Kaiser Permanente Northern California","ror":"https://ror.org/0302f6d89","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1343052199","https://openalex.org/I4405284138"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Corey M. Schwartz","raw_affiliation_strings":["Division of Medical Oncology, Kaiser Permanente Northern California, Oakland, California"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Division of Medical Oncology, Kaiser Permanente Northern California, Oakland, California","institution_ids":["https://openalex.org/I1343052199","https://openalex.org/I4405284138"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5023256087","display_name":"Dov M. Shalman","orcid":"https://orcid.org/0000-0003-4917-1815","observed_orcids":["https://orcid.org/0000-0003-4917-1815"]},"institutions":[{"id":"https://openalex.org/I1343052199","display_name":"Kaiser Permanente","ror":"https://ror.org/00t60zh31","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I1343052199"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Dov M. Shalman","raw_affiliation_strings":["Department of Palliative Care, Kaiser Permanente Southern California, Pasadena, California"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Palliative Care, Kaiser Permanente Southern California, Pasadena, California","institution_ids":["https://openalex.org/I1343052199"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5031324328","display_name":"Catherine B. Wall","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210117453","display_name":"Dana-Farber Cancer Institute","ror":"https://ror.org/02jzgtq86","country_code":"US","type":"facility","lineage":["https://openalex.org/I4210117453"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Catherine B. Wall","raw_affiliation_strings":["Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts","institution_ids":["https://openalex.org/I4210117453"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5029740107","display_name":"Jennifer W. Mack","orcid":"https://orcid.org/0000-0001-5791-4178","observed_orcids":["https://orcid.org/0000-0001-5791-4178"]},"institutions":[{"id":"https://openalex.org/I4210117453","display_name":"Dana-Farber Cancer Institute","ror":"https://ror.org/02jzgtq86","country_code":"US","type":"facility","lineage":["https://openalex.org/I4210117453"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jennifer W. Mack","raw_affiliation_strings":["Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts","Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts","Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts; Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts","institution_ids":["https://openalex.org/I4210117453"]},{"raw_affiliation_string":"Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts","institution_ids":["https://openalex.org/I4210117453"]},{"raw_affiliation_string":"Department of Pediatric Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts; Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts","institution_ids":["https://openalex.org/I4210117453"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":7,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":2.0383,"has_fulltext":true,"cited_by_count":8,"citation_normalized_percentile":{"value":0.86422426,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":94,"max":98},"biblio":{"volume":"21","issue":"12","first_page":"1243","last_page":"1250"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10177","display_name":"Palliative Care and End-of-Life Issues","score":0.4717000126838684,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"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/T10177","display_name":"Palliative Care and End-of-Life Issues","score":0.4717000126838684,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational 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/T13340","display_name":"Palliative and Oncologic Care","score":0.44999998807907104,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational 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":0.05339999869465828,"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/quality-of-life","display_name":"quality of life","score":0.9900000095367432},{"id":"https://openalex.org/keywords/adolescents-and-young-adults","display_name":"adolescents and young adults","score":0.9359999895095825},{"id":"https://openalex.org/keywords/advanced-cancer","display_name":"advanced cancer","score":1.0},{"id":"https://openalex.org/keywords/end-of-life-care","display_name":"end-of-life care","score":0.9990000128746033},{"id":"https://openalex.org/keywords/patient-centered-care","display_name":"patient-centered care","score":0.9269999861717224},{"id":"https://openalex.org/keywords/psychosocial-well-being","display_name":"psychosocial well-being","score":0.8140000104904175},{"id":"https://openalex.org/keywords/physical-well-being","display_name":"physical well-being","score":0.9139999747276306},{"id":"https://openalex.org/keywords/human-dignity","display_name":"human dignity","score":0.9760000109672546},{"id":"https://openalex.org/keywords/normality","display_name":"normality","score":0.9409999847412109},{"id":"https://openalex.org/keywords/family-caregivers","display_name":"family caregivers","score":0.9070000052452087},{"id":"https://openalex.org/keywords/healthcare-workers","display_name":"healthcare workers","score":0.8799999952316284},{"id":"https://openalex.org/keywords/care-planning","display_name":"care planning","score":0.625},{"id":"https://openalex.org/keywords/patient-perspectives","display_name":"patient perspectives","score":0.44699999690055847}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.7295349836349487},{"id":"https://openalex.org/C150966472","wikidata":"https://www.wikidata.org/wiki/Q3410145","display_name":"Psychosocial","level":2,"score":0.7273634672164917},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.6529788970947266},{"id":"https://openalex.org/C2778745096","wikidata":"https://www.wikidata.org/wiki/Q274782","display_name":"Dignity","level":2,"score":0.4995291233062744},{"id":"https://openalex.org/C2778979077","wikidata":"https://www.wikidata.org/wiki/Q330190","display_name":"Receipt","level":2,"score":0.49847984313964844},{"id":"https://openalex.org/C190248442","wikidata":"https://www.wikidata.org/wiki/Q839486","display_name":"Qualitative research","level":2,"score":0.4756340980529785},{"id":"https://openalex.org/C205545832","wikidata":"https://www.wikidata.org/wiki/Q17156455","display_name":"Young adult","level":2,"score":0.4606274664402008},{"id":"https://openalex.org/C2778087770","wikidata":"https://www.wikidata.org/wiki/Q2297111","display_name":"Social support","level":2,"score":0.4400438964366913},{"id":"https://openalex.org/C2908647359","wikidata":"https://www.wikidata.org/wiki/Q2625603","display_name":"Population","level":2,"score":0.4261382818222046},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.4173911511898041},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.39663198590278625},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.3689038157463074},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.17295074462890625},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.1436690092086792},{"id":"https://openalex.org/C99454951","wikidata":"https://www.wikidata.org/wiki/Q932068","display_name":"Environmental health","level":1,"score":0.0},{"id":"https://openalex.org/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0},{"id":"https://openalex.org/C17744445","wikidata":"https://www.wikidata.org/wiki/Q36442","display_name":"Political science","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/C542102704","wikidata":"https://www.wikidata.org/wiki/Q183257","display_name":"Psychotherapist","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},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","level":0,"score":0.0},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D000293","descriptor_name":"Adolescent","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006282","descriptor_name":"Health Personnel","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":"D009369","descriptor_name":"Neoplasms","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D009369","descriptor_name":"Neoplasms","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D011788","descriptor_name":"Quality of Life","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D013727","descriptor_name":"Terminal Care","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D017028","descriptor_name":"Caregivers","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":false},{"descriptor_ui":"D055815","descriptor_name":"Young Adult","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":3,"locations":[{"id":"doi:10.6004/jnccn.2023.7067","doi":"https://doi.org/10.6004/jnccn.2023.7067","is_oa":true,"landing_page_url":"https://doi.org/10.6004/jnccn.2023.7067","pdf_url":"https://jnccn.org/downloadpdf/view/journals/jnccn/21/12/article-p1243.pdf","source":{"id":"https://openalex.org/S935620192","display_name":"Journal of the National Comprehensive Cancer Network","issn_l":"1540-1405","issn":["1540-1405","1540-1413"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-2","ki-jl-1","medline","norway-1","poland-140","russia-white-list-1"],"host_organization":"https://openalex.org/P4324004213","host_organization_name":"National Comprehensive Cancer","host_organization_lineage":["https://openalex.org/P4324004213"],"host_organization_lineage_names":["National Comprehensive Cancer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the National Comprehensive Cancer Network","raw_type":"journal-article"},{"id":"pmid:38081124","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/38081124","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 National Comprehensive Cancer Network : JNCCN","raw_type":"Journal Article"},{"id":"pmh:oai:pubmedcentral.nih.gov:11128290","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/11128290","pdf_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC11128290/pdf/nihms-1995959.pdf","source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"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":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":"J Natl Compr Canc Netw","raw_type":"Text"}],"best_oa_location":{"id":"doi:10.6004/jnccn.2023.7067","doi":"https://doi.org/10.6004/jnccn.2023.7067","is_oa":true,"landing_page_url":"https://doi.org/10.6004/jnccn.2023.7067","pdf_url":"https://jnccn.org/downloadpdf/view/journals/jnccn/21/12/article-p1243.pdf","source":{"id":"https://openalex.org/S935620192","display_name":"Journal of the National Comprehensive Cancer Network","issn_l":"1540-1405","issn":["1540-1405","1540-1413"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","dongbi-b","doyens","jufo-2","ki-jl-1","medline","norway-1","poland-140","russia-white-list-1"],"host_organization":"https://openalex.org/P4324004213","host_organization_name":"National Comprehensive Cancer","host_organization_lineage":["https://openalex.org/P4324004213"],"host_organization_lineage_names":["National Comprehensive Cancer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of the National Comprehensive Cancer Network","raw_type":"journal-article"},"sustainable_development_goals":[{"display_name":"Good health and well-being","score":0.9940000176429749,"id":"https://metadata.un.org/sdg/3"}],"study_designs":[],"awards":[{"id":"https://openalex.org/G3476968757","display_name":"End-of-Life Care for Adolescents and Young Adults with Cancer: An Evaluation of Care and Development of Patient-Centered Quality Measures","funder_award_id":"R01CA218651","funder_id":"https://openalex.org/F4320337351","funder_display_name":"National Cancer Institute"},{"id":"https://openalex.org/G9000867685","display_name":"End-of-life care quality for adolescents and young adults with cancer: Including the patient voice in quality assessment","funder_award_id":"U01CA218651","funder_id":"https://openalex.org/F4320337351","funder_display_name":"National Cancer Institute"}],"funders":[{"id":"https://openalex.org/F4320337351","display_name":"National Cancer Institute","ror":"https://ror.org/040gcmg81"}],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W4389537571.pdf","grobid_xml":"https://content.openalex.org/works/W4389537571.grobid-xml"},"referenced_works_count":18,"referenced_works":["https://openalex.org/W1578432227","https://openalex.org/W1940142329","https://openalex.org/W1966751670","https://openalex.org/W1984595860","https://openalex.org/W2036397632","https://openalex.org/W2045093485","https://openalex.org/W2060624955","https://openalex.org/W2062141193","https://openalex.org/W2103346126","https://openalex.org/W2124131696","https://openalex.org/W2126285244","https://openalex.org/W2152045194","https://openalex.org/W2156145449","https://openalex.org/W2279074305","https://openalex.org/W2576148171","https://openalex.org/W2922430335","https://openalex.org/W3195519385","https://openalex.org/W4307581426"],"related_works":["https://openalex.org/W3195519385","https://openalex.org/W4409790211","https://openalex.org/W4307581426","https://openalex.org/W4289100960","https://openalex.org/W3160246206","https://openalex.org/W4327558618","https://openalex.org/W7160512215","https://openalex.org/W4399012600","https://openalex.org/W3045200399","https://openalex.org/W3194376894"],"abstract_inverted_index":{"BACKGROUND:":[0],"Adolescents":[1],"and":[2,28,76,89,119,145,157,166,171,173,185,199,251],"young":[3],"adults":[4],"(AYAs)":[5],"with":[6,39,48,84,189,246],"advanced":[7,49,85,247,285],"cancer":[8,286],"identify":[9],"maintaining":[10],"a":[11,18,26,51,237],"good":[12],"quality":[13],"of":[14,21,54,68,108,161,195,208,216,236,260],"life":[15],"(QoL)":[16],"as":[17],"central":[19],"goal":[20],"end-of-life":[22],"care.":[23,109,287],"QoL":[24,55,162,209,261,282],"is":[25,56],"dynamic":[27],"subjective":[29],"overarching":[30],"concept":[31],"that":[32,220,240],"refers":[33],"to":[34,46,127,222,276,279],"an":[35],"individual's":[36],"relative":[37],"satisfaction":[38],"their":[40,249,281,284],"own":[41],"life.":[42],"Despite":[43],"its":[44],"importance":[45],"AYAs":[47,194,245,278],"cancer,":[50,86,248],"patient-centered":[52,268],"definition":[53],"lacking":[57],"in":[58,106,233,262],"this":[59,263],"population.":[60,264],"PATIENTS":[61],"AND":[62],"METHODS:":[63],"This":[64],"qualitative":[65],"secondary":[66],"analysis":[67],"semistructured":[69],"interviews":[70],"was":[71,180,202,219],"conducted":[72],"across":[73,182],"3":[74],"institutions":[75],"1":[77],"online":[78],"support":[79],"community":[80],"among":[81,210],"AYA":[82,140],"patients":[83],"family":[87,143,174,200],"caregivers,":[88,144,184,250],"health":[90,147,186,252],"care":[91,148,187,238,253,270],"providers":[92,149,254],"who":[93],"cared":[94],"for":[95,116,125],"living":[96],"or":[97],"recently":[98],"deceased":[99],"AYAs.":[100],"Interviewees":[101],"were":[102,111,123,131,163],"asked":[103],"about":[104],"priorities":[105],"receipt":[107],"Interviews":[110],"transcribed":[112],"using":[113],"NVivo":[114],"software":[115],"primary":[117],"analysis,":[118],"previously":[120],"coded":[121],"excerpts":[122,130],"screened":[124],"references":[126],"QoL.":[128,228],"Relevant":[129],"sorted":[132],"into":[133],"organizing":[134],"domains.":[135,243],"RESULTS:":[136],"Participants":[137],"included":[138],"23":[139],"patients,":[141],"28":[142],"29":[146],"(including":[150],"physicians,":[151],"nurses,":[152],"nurse":[153],"practitioners,":[154],"social":[155],"workers,":[156],"psychologists).":[158],"Four":[159],"domains":[160,259,275],"identified:":[164],"psychosocial":[165],"physical":[167],"well-being,":[168],"dignity,":[169],"normalcy,":[170],"personal":[172],"relationships.":[175],"Within":[176],"each":[177,217],"domain":[178,207,218],"there":[179],"agreement":[181],"AYAs,":[183],"providers,":[188],"nuanced":[190],"perspectives":[191,226],"provided":[192],"by":[193],"different":[196],"ages.":[197],"Personal":[198],"relationships":[201],"the":[203,234],"most":[204],"frequently":[205],"referenced":[206],"all":[211],"participants.":[212],"A":[213],"common":[214],"feature":[215],"adaptation":[221],"current":[223],"circumstances":[224],"impacted":[225],"on":[227,256],"Patients":[229],"valued":[230],"active":[231],"participation":[232],"development":[235],"plan":[239],"supported":[241],"these":[242,274],"CONCLUSIONS:":[244],"agree":[255],"several":[257],"broad":[258],"To":[265],"provide":[266],"high-quality,":[267],"care,":[269],"plans":[271],"should":[272],"integrate":[273],"enable":[277],"maximize":[280],"throughout":[283]},"counts_by_year":[{"year":2026,"cited_by_count":2},{"year":2025,"cited_by_count":4},{"year":2024,"cited_by_count":2}],"updated_date":"2026-10-31T12:09:11.096373","created_date":"2023-12-12T00:00:00"}
