{"id":"https://openalex.org/W2021867136","doi":"https://doi.org/10.1002/mpo.10278","title":"Impact on survivors of retinoblastoma when informed of study results on risk of second cancers","display_name":"Impact on survivors of retinoblastoma when informed of study results on risk of second cancers","publication_year":2003,"publication_date":"2003-05-16","ids":{"openalex":"https://openalex.org/W2021867136","doi":"https://doi.org/10.1002/mpo.10278","mag":"2021867136","pmid":"https://pubmed.ncbi.nlm.nih.gov/12764741"},"language":"en","primary_location":{"id":"doi:10.1002/mpo.10278","doi":"https://doi.org/10.1002/mpo.10278","is_oa":false,"landing_page_url":"https://doi.org/10.1002/mpo.10278","pdf_url":null,"source":{"id":"https://openalex.org/S179546387","display_name":"Medical and Pediatric Oncology","issn_l":"0098-1532","issn":["0098-1532","1096-911X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core"],"host_organization":"https://openalex.org/P4310320571","host_organization_name":"Alan R. Liss, Inc.","host_organization_lineage":["https://openalex.org/P4310320571"],"host_organization_lineage_names":["Alan R. Liss, Inc."],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Medical and Pediatric Oncology","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/A5079029264","display_name":"Charlene J. Schulz","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I1334819555","display_name":"Memorial Sloan Kettering Cancer Center","ror":"https://ror.org/02yrq0923","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1334819555"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Charlene J. Schulz","raw_affiliation_strings":["Memorial Sloan-Kettering Cancer Center, New York, New York 10021, USA","Memorial Sloan Kettering Cancer Center, New York, New York"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Memorial Sloan-Kettering Cancer Center, New York, New York 10021, USA","institution_ids":["https://openalex.org/I1334819555"]},{"raw_affiliation_string":"Memorial Sloan Kettering Cancer Center, New York, New York","institution_ids":["https://openalex.org/I1334819555"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5025346417","display_name":"Mary P. Riddle","orcid":"https://orcid.org/0000-0001-9235-687X","observed_orcids":["https://orcid.org/0000-0001-9235-687X"]},"institutions":[{"id":"https://openalex.org/I1334819555","display_name":"Memorial Sloan Kettering Cancer Center","ror":"https://ror.org/02yrq0923","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1334819555"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Mary P. Riddle","raw_affiliation_strings":["Memorial Sloan-Kettering Cancer Center, New York, New York"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Memorial Sloan-Kettering Cancer Center, New York, New York","institution_ids":["https://openalex.org/I1334819555"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5085872951","display_name":"Heiddis B. Valdimirsdottir","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I98704320","display_name":"Icahn School of Medicine at Mount Sinai","ror":"https://ror.org/04a9tmd77","country_code":"US","type":"education","lineage":["https://openalex.org/I1320796813","https://openalex.org/I98704320"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Heiddis B. Valdimirsdottir","raw_affiliation_strings":["Mt. Sinai School of Medicine, New York, New York"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Mt. Sinai School of Medicine, New York, New York","institution_ids":["https://openalex.org/I98704320"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5047847872","display_name":"David H. Abramson","orcid":"https://orcid.org/0000-0002-0118-6391","observed_orcids":["https://orcid.org/0000-0002-0118-6391"]},"institutions":[{"id":"https://openalex.org/I1340179700","display_name":"NewYork\u2013Presbyterian Hospital","ror":"https://ror.org/03gzbrs57","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1340179700"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"David H. Abramson","raw_affiliation_strings":["New York Presbyterian Hospital, New York, New York"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"New York Presbyterian Hospital, New York, New York","institution_ids":["https://openalex.org/I1340179700"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5063077038","display_name":"Charles A. Sklar","orcid":"https://orcid.org/0000-0002-1702-5031","observed_orcids":["https://orcid.org/0000-0002-1702-5031"]},"institutions":[{"id":"https://openalex.org/I1334819555","display_name":"Memorial Sloan Kettering Cancer Center","ror":"https://ror.org/02yrq0923","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1334819555"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Charles A. Sklar","raw_affiliation_strings":["Memorial Sloan-Kettering Cancer Center, New York, New York"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Memorial Sloan-Kettering Cancer Center, New York, New York","institution_ids":["https://openalex.org/I1334819555"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":3,"corresponding_author_ids":["https://openalex.org/A5063077038"],"corresponding_institution_ids":["https://openalex.org/I1334819555"],"apc_list":null,"apc_paid":null,"fwci":4.5838,"has_fulltext":false,"cited_by_count":67,"citation_normalized_percentile":{"value":0.94155518,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":88,"max":97},"biblio":{"volume":"41","issue":"1","first_page":"36","last_page":"43"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11141","display_name":"Childhood Cancer Survivors' Quality of Life","score":0.7480000257492065,"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"}},"topics":[{"id":"https://openalex.org/T11141","display_name":"Childhood Cancer Survivors' Quality of Life","score":0.7480000257492065,"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/T11328","display_name":"Ocular Oncology and Treatments","score":0.10350000113248825,"subfield":{"id":"https://openalex.org/subfields/2731","display_name":"Ophthalmology"},"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/T14078","display_name":"Multiple and Secondary Primary Cancers","score":0.022600000724196434,"subfield":{"id":"https://openalex.org/subfields/2713","display_name":"Epidemiology"},"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/retinoblastoma-survivors","display_name":"retinoblastoma survivors","score":0.9390000104904175},{"id":"https://openalex.org/keywords/secondary-cancer-risk","display_name":"secondary cancer risk","score":0.7450000047683716},{"id":"https://openalex.org/keywords/research-feedback","display_name":"research feedback","score":0.7110000252723694},{"id":"https://openalex.org/keywords/parental-caregivers","display_name":"parental caregivers","score":0.4129999876022339},{"id":"https://openalex.org/keywords/psychological-distress","display_name":"psychological distress","score":0.6200000047683716},{"id":"https://openalex.org/keywords/patient-preferences","display_name":"patient preferences","score":0.34700000286102295}],"concepts":[{"id":"https://openalex.org/C2776577112","wikidata":"https://www.wikidata.org/wiki/Q500695","display_name":"Retinoblastoma","level":3,"score":0.8436545133590698},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.7638895511627197},{"id":"https://openalex.org/C122980154","wikidata":"https://www.wikidata.org/wiki/Q205555","display_name":"Feeling","level":2,"score":0.712982714176178},{"id":"https://openalex.org/C2779302386","wikidata":"https://www.wikidata.org/wiki/Q79871","display_name":"Anger","level":2,"score":0.6782397031784058},{"id":"https://openalex.org/C558461103","wikidata":"https://www.wikidata.org/wiki/Q154430","display_name":"Anxiety","level":2,"score":0.5825149416923523},{"id":"https://openalex.org/C2778707766","wikidata":"https://www.wikidata.org/wiki/Q202064","display_name":"Phone","level":2,"score":0.4819581210613251},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.42223218083381653},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.35192376375198364},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.3454148769378662},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.21661749482154846},{"id":"https://openalex.org/C77805123","wikidata":"https://www.wikidata.org/wiki/Q161272","display_name":"Social psychology","level":1,"score":0.12097868323326111},{"id":"https://openalex.org/C185592680","wikidata":"https://www.wikidata.org/wiki/Q2329","display_name":"Chemistry","level":0,"score":0.0},{"id":"https://openalex.org/C55493867","wikidata":"https://www.wikidata.org/wiki/Q7094","display_name":"Biochemistry","level":1,"score":0.0},{"id":"https://openalex.org/C41895202","wikidata":"https://www.wikidata.org/wiki/Q8162","display_name":"Linguistics","level":1,"score":0.0},{"id":"https://openalex.org/C138885662","wikidata":"https://www.wikidata.org/wiki/Q5891","display_name":"Philosophy","level":0,"score":0.0},{"id":"https://openalex.org/C104317684","wikidata":"https://www.wikidata.org/wiki/Q7187","display_name":"Gene","level":2,"score":0.0}],"mesh":[{"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":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005190","descriptor_name":"Family","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D005246","descriptor_name":"Feedback","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":"D006167","descriptor_name":"Guilt","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D008875","descriptor_name":"Middle Aged","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D009381","descriptor_name":"Neoplasms, Radiation-Induced","qualifier_ui":"Q000209","qualifier_name":"etiology","is_major_topic":false},{"descriptor_ui":"D009381","descriptor_name":"Neoplasms, Radiation-Induced","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D009381","descriptor_name":"Neoplasms, Radiation-Induced","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D009519","descriptor_name":"New York City","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D011795","descriptor_name":"Surveys and Questionnaires","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012175","descriptor_name":"Retinoblastoma","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D012175","descriptor_name":"Retinoblastoma","qualifier_ui":"Q000532","qualifier_name":"radiotherapy","is_major_topic":false},{"descriptor_ui":"D012307","descriptor_name":"Risk Factors","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D012509","descriptor_name":"Sarcoma","qualifier_ui":"Q000209","qualifier_name":"etiology","is_major_topic":false},{"descriptor_ui":"D012509","descriptor_name":"Sarcoma","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D012509","descriptor_name":"Sarcoma","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":false},{"descriptor_ui":"D016609","descriptor_name":"Neoplasms, Second Primary","qualifier_ui":"Q000209","qualifier_name":"etiology","is_major_topic":false},{"descriptor_ui":"D016609","descriptor_name":"Neoplasms, Second Primary","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D016609","descriptor_name":"Neoplasms, Second Primary","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D017741","descriptor_name":"Survivors","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D019572","descriptor_name":"Retinal Neoplasms","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D019572","descriptor_name":"Retinal Neoplasms","qualifier_ui":"Q000532","qualifier_name":"radiotherapy","is_major_topic":false}],"locations_count":2,"locations":[{"id":"doi:10.1002/mpo.10278","doi":"https://doi.org/10.1002/mpo.10278","is_oa":false,"landing_page_url":"https://doi.org/10.1002/mpo.10278","pdf_url":null,"source":{"id":"https://openalex.org/S179546387","display_name":"Medical and Pediatric Oncology","issn_l":"0098-1532","issn":["0098-1532","1096-911X"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core"],"host_organization":"https://openalex.org/P4310320571","host_organization_name":"Alan R. Liss, Inc.","host_organization_lineage":["https://openalex.org/P4310320571"],"host_organization_lineage_names":["Alan R. Liss, Inc."],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Medical and Pediatric Oncology","raw_type":"journal-article"},{"id":"pmid:12764741","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/12764741","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":"Medical and pediatric oncology","raw_type":"Journal Article"}],"best_oa_location":null,"sustainable_development_goals":[{"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3","score":0.9391000270843506}],"study_designs":[{"display_name":"Observational Study","id":"https://openalex.org/study-designs/observational-study"}],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":22,"referenced_works":["https://openalex.org/W61502537","https://openalex.org/W79607747","https://openalex.org/W1551706879","https://openalex.org/W1556555576","https://openalex.org/W1564537347","https://openalex.org/W1886867534","https://openalex.org/W1969194887","https://openalex.org/W1981251682","https://openalex.org/W1994072527","https://openalex.org/W1997470314","https://openalex.org/W2013863113","https://openalex.org/W2021418748","https://openalex.org/W2028505011","https://openalex.org/W2033090198","https://openalex.org/W2058454398","https://openalex.org/W2064891444","https://openalex.org/W2091446053","https://openalex.org/W2105078769","https://openalex.org/W2123528350","https://openalex.org/W2154962291","https://openalex.org/W2334452855","https://openalex.org/W2441460108"],"related_works":["https://openalex.org/W4285600217","https://openalex.org/W7057066509","https://openalex.org/W3177928014","https://openalex.org/W2958054793","https://openalex.org/W2794434223","https://openalex.org/W2222927661","https://openalex.org/W7028886979","https://openalex.org/W2987719260","https://openalex.org/W3163287345","https://openalex.org/W1986999068"],"abstract_inverted_index":{"BACKGROUND:":[0],"To":[1],"assess":[2],"the":[3,16,73,81,101,135,200,220,252],"impact":[4],"of":[5,18,57,78,147,168,216,227,267,278],"providing":[6],"research":[7,246],"feedback":[8,44,221,249,270,279],"to":[9,27,34,38,72,84,92,98,100,133,165,177,260,274],"retinoblastoma":[10,29,50,66,179],"survivors":[11,30,51,67,143,180],"or":[12,208],"their":[13,36,223],"parents":[14,33,70,160],"regarding":[15],"risk":[17,56],"second":[19,58,148],"cancers.":[20,59,149],"PROCEDURE:":[21],"A":[22],"four-page":[23],"survey":[24],"was":[25,232],"sent":[26],"801":[28],"and":[31,63,68,87,119,157,174,197,238,280],"55":[32],"ascertain":[35],"reactions":[37],"a":[39,46,188,205],"\"results-letter.\"":[40],"The":[41,225],"\"results-letter\"":[42,82],"provided":[43],"from":[45],"study":[47],"indicating":[48],"that":[49,127,245],"may":[52],"be":[53],"at":[54],"increased":[55],"RESULTS:":[60],"Three":[61],"hundred":[62],"thirty-nine":[64],"(339)":[65],"43":[69],"responded":[71],"survey.":[74],"Eighty-four":[75],"percent":[76,214],"(84%)":[77],"respondents":[79,125,218],"found":[80,89],"\"very\"":[83,91,97],"\"extremely\"":[85,93,99],"understandable":[86],"72%":[88],"it":[90],"useful.":[94],"Participants":[95],"scored":[96],"following":[102,269],"emotions:":[103],"frightened":[104,175,198],"=":[105,108,111,114,117,121],"28%,":[106],"anxious":[107],"27%,":[109],"sad":[110],"25%,":[112],"overwhelmed":[113],"15%,":[115],"angry":[116],"11%,":[118],"guilty":[120],"6%.":[122],"Five":[123],"(1.4%)":[124],"stated":[126],"they":[128],"would":[129],"have":[130],"preferred":[131],"not":[132,139],"receive":[134],"results.":[136],"Responses":[137],"did":[138],"vary":[140],"significantly":[141,162,192],"between":[142,155],"with":[144,185,204,222,235],"different":[145],"risks":[146],"No":[150],"significant":[151],"differences":[152],"were":[153,161,191],"observed":[154],"males":[156],"females.":[158],"However,":[159],"more":[163,193],"likely":[164],"report":[166],"feelings":[167],"anxiety,":[169],"guilt,":[170],"anger,":[171],"being":[172],"overwhelmed,":[173,196],"compared":[176],"adult":[178],"(P":[181,210],"<":[182,211],"0.05).":[183,212],"Individuals":[184],"less":[186],"than":[187,202],"college":[189,206],"education":[190],"sad,":[194],"angry,":[195],"by":[199,233],"information":[201,253],"individuals":[203,262],"degree":[207],"higher":[209],"Eighteen":[213],"(18%)":[215],"all":[217],"shared":[219],"physician.":[224],"method":[226],"choice":[228],"for":[229],"receiving":[230],"results":[231],"letter":[234],"contact":[236],"names":[237],"phone":[239],"numbers.":[240],"CONCLUSIONS:":[241],"These":[242],"findings":[243],"indicate":[244],"participants":[247],"want":[248],"even":[250],"when":[251],"is":[254],"upsetting.":[255],"Additional":[256],"studies":[257],"are":[258],"needed":[259],"identify":[261],"who":[263],"experience":[264],"greater":[265],"levels":[266],"distress":[268],"in":[271],"an":[272],"attempt":[273],"provide":[275],"improved":[276],"methods":[277],"support.":[281]},"counts_by_year":[{"year":2026,"cited_by_count":1},{"year":2025,"cited_by_count":1},{"year":2022,"cited_by_count":3},{"year":2021,"cited_by_count":1},{"year":2020,"cited_by_count":1},{"year":2019,"cited_by_count":3},{"year":2017,"cited_by_count":2},{"year":2016,"cited_by_count":2},{"year":2015,"cited_by_count":3},{"year":2014,"cited_by_count":1},{"year":2013,"cited_by_count":2},{"year":2012,"cited_by_count":2}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2016-06-24T00:00:00"}
