{"id":"https://openalex.org/W2396787823","doi":"https://doi.org/10.14694/edbook_am.2012.32.80","title":"Capturing the Patient Perspective: Patient-Reported Outcomes as Clinical Trial Endpoints","display_name":"Capturing the Patient Perspective: Patient-Reported Outcomes as Clinical Trial Endpoints","publication_year":2012,"publication_date":"2012-06-01","ids":{"openalex":"https://openalex.org/W2396787823","doi":"https://doi.org/10.14694/edbook_am.2012.32.80","mag":"2396787823","pmid":"https://pubmed.ncbi.nlm.nih.gov/24451723"},"language":"en","primary_location":{"id":"doi:10.14694/edbook_am.2012.32.80","doi":"https://doi.org/10.14694/edbook_am.2012.32.80","is_oa":false,"landing_page_url":"https://doi.org/10.14694/edbook_am.2012.32.80","pdf_url":null,"source":{"id":"https://openalex.org/S4210215109","display_name":"American Society of Clinical Oncology Educational Book","issn_l":"1548-8748","issn":["1548-8748","1548-8756","1930-7020"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","ki-jl-1","medline","poland-40","russia-white-list-1"],"host_organization":"https://openalex.org/P4310320068","host_organization_name":"American Society of Clinical Oncology","host_organization_lineage":["https://openalex.org/P4310320068"],"host_organization_lineage_names":["American Society of Clinical Oncology"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"American Society of Clinical Oncology Educational Book","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"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/A5005691073","display_name":"Deborah Watkins Bruner","orcid":"https://orcid.org/0000-0002-5770-9948","observed_orcids":["https://orcid.org/0000-0002-5770-9948"]},"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"]},{"id":"https://openalex.org/I150468666","display_name":"Emory University","ror":"https://ror.org/03czfpz43","country_code":"US","type":"education","lineage":["https://openalex.org/I150468666"]},{"id":"https://openalex.org/I154057602","display_name":"Henry Ford Health","ror":"https://ror.org/02kwnkm68","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I154057602"]},{"id":"https://openalex.org/I4390039307","display_name":"Winship Cancer Institute","ror":"https://ror.org/02gars961","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I132943300","https://openalex.org/I150468666","https://openalex.org/I4390039307"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Deborah Watkins Bruner","raw_affiliation_strings":["From the Nell Hodgson Woodruff School of Nursing, Winship Cancer Institute, Emory University, Atlanta, GA; Radiation Oncology Department, Henry Ford Health System, Detroit, MI; Memorial Sloan-Kettering Cancer Center, New York, NY"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"From the Nell Hodgson Woodruff School of Nursing, Winship Cancer Institute, Emory University, Atlanta, GA; Radiation Oncology Department, Henry Ford Health System, Detroit, MI; Memorial Sloan-Kettering Cancer Center, New York, NY","institution_ids":["https://openalex.org/I1334819555","https://openalex.org/I150468666","https://openalex.org/I154057602","https://openalex.org/I4390039307"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5004625690","display_name":"Benjamin Movsas","orcid":"https://orcid.org/0000-0003-2703-9776","observed_orcids":["https://orcid.org/0000-0003-2703-9776"]},"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"]},{"id":"https://openalex.org/I150468666","display_name":"Emory University","ror":"https://ror.org/03czfpz43","country_code":"US","type":"education","lineage":["https://openalex.org/I150468666"]},{"id":"https://openalex.org/I154057602","display_name":"Henry Ford Health","ror":"https://ror.org/02kwnkm68","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I154057602"]},{"id":"https://openalex.org/I4390039307","display_name":"Winship Cancer Institute","ror":"https://ror.org/02gars961","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I132943300","https://openalex.org/I150468666","https://openalex.org/I4390039307"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Benjamin Movsas","raw_affiliation_strings":["From the Nell Hodgson Woodruff School of Nursing, Winship Cancer Institute, Emory University, Atlanta, GA; Radiation Oncology Department, Henry Ford Health System, Detroit, MI; Memorial Sloan-Kettering Cancer Center, New York, NY"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"From the Nell Hodgson Woodruff School of Nursing, Winship Cancer Institute, Emory University, Atlanta, GA; Radiation Oncology Department, Henry Ford Health System, Detroit, MI; Memorial Sloan-Kettering Cancer Center, New York, NY","institution_ids":["https://openalex.org/I1334819555","https://openalex.org/I150468666","https://openalex.org/I154057602","https://openalex.org/I4390039307"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5091400921","display_name":"Ethan Basch","orcid":"https://orcid.org/0000-0003-3813-9318","observed_orcids":["https://orcid.org/0000-0003-3813-9318"]},"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"]},{"id":"https://openalex.org/I150468666","display_name":"Emory University","ror":"https://ror.org/03czfpz43","country_code":"US","type":"education","lineage":["https://openalex.org/I150468666"]},{"id":"https://openalex.org/I154057602","display_name":"Henry Ford Health","ror":"https://ror.org/02kwnkm68","country_code":"US","type":"nonprofit","lineage":["https://openalex.org/I154057602"]},{"id":"https://openalex.org/I4390039307","display_name":"Winship Cancer Institute","ror":"https://ror.org/02gars961","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I132943300","https://openalex.org/I150468666","https://openalex.org/I4390039307"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Ethan Basch","raw_affiliation_strings":["From the Nell Hodgson Woodruff School of Nursing, Winship Cancer Institute, Emory University, Atlanta, GA; Radiation Oncology Department, Henry Ford Health System, Detroit, MI; Memorial Sloan-Kettering Cancer Center, New York, NY"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"From the Nell Hodgson Woodruff School of Nursing, Winship Cancer Institute, Emory University, Atlanta, GA; Radiation Oncology Department, Henry Ford Health System, Detroit, MI; Memorial Sloan-Kettering Cancer Center, New York, NY","institution_ids":["https://openalex.org/I1334819555","https://openalex.org/I150468666","https://openalex.org/I154057602","https://openalex.org/I4390039307"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":4,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":1.16,"has_fulltext":false,"cited_by_count":23,"citation_normalized_percentile":{"value":0.79206778,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":88,"max":97},"biblio":{"volume":null,"issue":"32","first_page":"139","last_page":"144"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10178","display_name":"Cancer survivorship and care","score":0.7997999787330627,"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"}},"topics":[{"id":"https://openalex.org/T10178","display_name":"Cancer survivorship and care","score":0.7997999787330627,"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"}},{"id":"https://openalex.org/T11235","display_name":"Statistical Methods in Clinical Trials","score":0.1370999962091446,"subfield":{"id":"https://openalex.org/subfields/2613","display_name":"Statistics and Probability"},"field":{"id":"https://openalex.org/fields/26","display_name":"Mathematics"},"domain":{"id":"https://openalex.org/domains/3","display_name":"Physical Sciences"}},{"id":"https://openalex.org/T11943","display_name":"Pharmacovigilance and Adverse Drug Reactions","score":0.00930000003427267,"subfield":{"id":"https://openalex.org/subfields/3005","display_name":"Toxicology"},"field":{"id":"https://openalex.org/fields/30","display_name":"Pharmacology, Toxicology and Pharmaceutics"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/patient-reported-outcomes","display_name":"patient-reported outcomes","score":1.0},{"id":"https://openalex.org/keywords/clinical-trial-endpoints","display_name":"clinical trial endpoints","score":0.9129999876022339},{"id":"https://openalex.org/keywords/ctcae","display_name":"CTCAE","score":0.9580000042915344},{"id":"https://openalex.org/keywords/symptom-reporting","display_name":"symptom reporting","score":0.5979999899864197},{"id":"https://openalex.org/keywords/cancer-clinical-trials","display_name":"cancer clinical trials","score":0.49900001287460327},{"id":"https://openalex.org/keywords/adverse-event-reporting","display_name":"adverse event reporting","score":0.5529999732971191},{"id":"https://openalex.org/keywords/pro-ctcae","display_name":"PRO-CTCAE","score":0.8320000171661377},{"id":"https://openalex.org/keywords/patient-adherence","display_name":"patient adherence","score":0.4309999942779541},{"id":"https://openalex.org/keywords/comparative-effectiveness","display_name":"comparative effectiveness","score":0.5730000138282776}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.6907907128334045},{"id":"https://openalex.org/C535046627","wikidata":"https://www.wikidata.org/wiki/Q30612","display_name":"Clinical trial","level":2,"score":0.6061920523643494},{"id":"https://openalex.org/C547195049","wikidata":"https://www.wikidata.org/wiki/Q1725664","display_name":"Terminology","level":2,"score":0.5781400203704834},{"id":"https://openalex.org/C195910791","wikidata":"https://www.wikidata.org/wiki/Q1324077","display_name":"Medical record","level":2,"score":0.46597835421562195},{"id":"https://openalex.org/C197934379","wikidata":"https://www.wikidata.org/wiki/Q2047938","display_name":"Adverse effect","level":2,"score":0.46353793144226074},{"id":"https://openalex.org/C2779517570","wikidata":"https://www.wikidata.org/wiki/Q7144954","display_name":"Patient-reported outcome","level":3,"score":0.42688262462615967},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.4039381146430969},{"id":"https://openalex.org/C19527891","wikidata":"https://www.wikidata.org/wiki/Q1120908","display_name":"Medical physics","level":1,"score":0.36119598150253296},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.14805558323860168},{"id":"https://openalex.org/C141071460","wikidata":"https://www.wikidata.org/wiki/Q40821","display_name":"Surgery","level":1,"score":0.12566572427749634},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.12257662415504456},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.10133606195449829},{"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/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.0}],"mesh":[],"locations_count":2,"locations":[{"id":"doi:10.14694/edbook_am.2012.32.80","doi":"https://doi.org/10.14694/edbook_am.2012.32.80","is_oa":false,"landing_page_url":"https://doi.org/10.14694/edbook_am.2012.32.80","pdf_url":null,"source":{"id":"https://openalex.org/S4210215109","display_name":"American Society of Clinical Oncology Educational Book","issn_l":"1548-8748","issn":["1548-8748","1548-8756","1930-7020"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","ki-jl-1","medline","poland-40","russia-white-list-1"],"host_organization":"https://openalex.org/P4310320068","host_organization_name":"American Society of Clinical Oncology","host_organization_lineage":["https://openalex.org/P4310320068"],"host_organization_lineage_names":["American Society of Clinical Oncology"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"American Society of Clinical Oncology Educational Book","raw_type":"journal-article"},{"id":"pmid:24451723","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/24451723","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":"American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting","raw_type":"Journal Article"}],"best_oa_location":null,"sustainable_development_goals":[{"display_name":"Good health and well-being","score":0.9922999739646912,"id":"https://metadata.un.org/sdg/3"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":18,"referenced_works":["https://openalex.org/W95063064","https://openalex.org/W1973894368","https://openalex.org/W2002330540","https://openalex.org/W2015569024","https://openalex.org/W2028742034","https://openalex.org/W2043517595","https://openalex.org/W2051370624","https://openalex.org/W2053339297","https://openalex.org/W2086708958","https://openalex.org/W2090031841","https://openalex.org/W2094296898","https://openalex.org/W2101881391","https://openalex.org/W2145345262","https://openalex.org/W2150432858","https://openalex.org/W2154187194","https://openalex.org/W2154205092","https://openalex.org/W2156059498","https://openalex.org/W2170933165"],"related_works":["https://openalex.org/W2094296898","https://openalex.org/W4230202400","https://openalex.org/W2001833314","https://openalex.org/W2266520230","https://openalex.org/W3130482401","https://openalex.org/W4310807091","https://openalex.org/W2896552768","https://openalex.org/W4300080925","https://openalex.org/W2113464761","https://openalex.org/W4298377821"],"abstract_inverted_index":{"Just":[0],"as":[1,130],"clinical":[2,24,202,213],"trial":[3],"design":[4],"and":[5,13,90,103,113,136,161,181,195],"rigor":[6],"have":[7,17],"evolved":[8],"with":[9,46,85,139,159],"improvements":[10],"in":[11,23,115,143,176,187,201,212,224],"methods":[12,18],"processes,":[14],"so":[15],"too":[16],"for":[19,35,59,63,165,197,227,240],"capturing":[20],"patient":[21,47,72,140,157,166],"data":[22,83,123],"trials.":[25,214],"Substantial":[26],"evidence":[27],"suggests":[28],"that":[29],"standard":[30,233],"physician":[31,74],"reporting":[32,50,145,208,245],"of":[33,93,111,117,154,156,163,178,199,219],"symptoms":[34],"which":[36],"we":[37],"lack":[38,110,153,162],"objective":[39],"diagnostics":[40],"(e.g.,":[41],"pain)":[42],"is":[43],"often":[44],"discordant":[45],"self-report.":[48,141],"Current":[49],"using":[51],"the":[52,91,101,109,118,193,217,236,248],"National":[53],"Cancer":[54],"Institute":[55],"Common":[56],"Terminology":[57],"Criteria":[58],"Adverse":[60],"Events":[61],"(CTC[AE])":[62],"symptom":[64,134,144,244],"capture":[65,124],"relies":[66],"on":[67,105],"a":[68],"filtering":[69],"system,":[70],"from":[71],"to":[73,75,78,82,148,173,210,247],"medical":[76,79],"record":[77,80],"abstraction":[81],"entry,":[84],"each":[86],"step":[87],"requiring":[88],"interpretation":[89],"possibility":[92],"error.":[94],"In":[95,215],"contrast,":[96],"patient-reported":[97,188],"outcomes":[98],"(PROs)":[99],"eliminate":[100],"filter":[102],"rely":[104],"direct":[106],"report.":[107],"Furthermore,":[108],"validation":[112],"training":[114],"use":[116],"CTC(AE)":[119,211],"creates":[120],"an":[121],"inadequate":[122],"system.":[125],"Inadequacies":[126],"might":[127,204],"be":[128],"observed":[129],"underreporting":[131],"or":[132],"overreporting":[133],"prevalence":[135],"severity":[137],"compared":[138],"Inaccuracies":[142],"can":[146,170],"lead":[147,172],"missing":[149],"important":[150],"prognostic":[151],"information,":[152],"understanding":[155],"adherence":[158],"therapies,":[160],"information":[164],"decision":[167],"making.":[168],"They":[169],"also":[171],"opportunities":[174],"lost":[175],"terms":[177],"labeling":[179],"claims":[180],"comparative":[182],"effectiveness":[183],"analyses.":[184],"New":[185],"developments":[186],"outcome":[189],"(PRO)":[190],"reporting,":[191,235],"including":[192],"PRO-CTC(AE)":[194],"models":[196],"incorporation":[198],"PROs":[200],"trials,":[203],"facilitate":[205],"routine":[206,242],"PRO":[207,221,243],"complementary":[209,246],"addition,":[216],"cadre":[218],"validated":[220],"instruments":[222],"already":[223],"existence":[225],"allows":[226],"more":[228],"in-depth,":[229],"hypothesis-driven":[230],"evaluations.":[231],"For":[232],"toxicity":[234],"time":[237],"has":[238],"come":[239],"mandatory":[241],"CTC(AE).":[249]},"counts_by_year":[{"year":2025,"cited_by_count":1},{"year":2024,"cited_by_count":2},{"year":2022,"cited_by_count":3},{"year":2021,"cited_by_count":2},{"year":2020,"cited_by_count":1},{"year":2019,"cited_by_count":2},{"year":2018,"cited_by_count":3},{"year":2016,"cited_by_count":2},{"year":2015,"cited_by_count":3},{"year":2014,"cited_by_count":2},{"year":2013,"cited_by_count":1},{"year":2012,"cited_by_count":1}],"updated_date":"2026-10-27T15:51:10.671819","created_date":"2016-06-24T00:00:00"}
