{"id":"https://openalex.org/W2018077057","doi":"https://doi.org/10.1542/peds.2003-0913-l","title":"Palliative Care: A Supportive Adjunct to Pediatric Phase I Clinical Trials for Anticancer Agents?","display_name":"Palliative Care: A Supportive Adjunct to Pediatric Phase I Clinical Trials for Anticancer Agents?","publication_year":2004,"publication_date":"2004-09-01","ids":{"openalex":"https://openalex.org/W2018077057","doi":"https://doi.org/10.1542/peds.2003-0913-l","mag":"2018077057","pmid":"https://pubmed.ncbi.nlm.nih.gov/15342863"},"language":"en","primary_location":{"id":"doi:10.1542/peds.2003-0913-l","doi":"https://doi.org/10.1542/peds.2003-0913-l","is_oa":false,"landing_page_url":"https://doi.org/10.1542/peds.2003-0913-l","pdf_url":null,"source":{"id":"https://openalex.org/S77494981","display_name":"PEDIATRICS","issn_l":"0031-4005","issn":["0031-4005","1098-4275"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-class-a","anvur-scientific","cwts-core","dongbi-a","doyens","erih-plus","jufo-3","ki-jl-3","medline","norway-2","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310315734","host_organization_name":"American Academy of Pediatrics","host_organization_lineage":["https://openalex.org/P4310315734"],"host_organization_lineage_names":["American Academy of Pediatrics"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Pediatrics","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/A5071969192","display_name":"Connie M. Ulrich","orcid":"https://orcid.org/0000-0001-5681-3463","observed_orcids":["https://orcid.org/0000-0001-5681-3463"]},"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/I4210155647","display_name":"National Institutes of Health Clinical Center","ror":"https://ror.org/04vfsmv21","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210155647"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Connie M. Ulrich","raw_affiliation_strings":["Department of Clinical Bioethics,
 Warren G. Magnuson Clinical Center
 National Institutes of Health
 Bethesda, MD 20892"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Clinical Bioethics,
 Warren G. Magnuson Clinical Center
 National Institutes of Health
 Bethesda, MD 20892","institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I4210155647"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5041172209","display_name":"Christine Grady","orcid":"https://orcid.org/0000-0002-9093-4450","observed_orcids":["https://orcid.org/0000-0002-9093-4450"]},"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/I4210155647","display_name":"National Institutes of Health Clinical Center","ror":"https://ror.org/04vfsmv21","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210155647"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Christine Grady","raw_affiliation_strings":["Department of Clinical Bioethics,
 Warren G. Magnuson Clinical Center
 National Institutes of Health
 Bethesda, MD 20892"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Clinical Bioethics,
 Warren G. Magnuson Clinical Center
 National Institutes of Health
 Bethesda, MD 20892","institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I4210155647"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5065618670","display_name":"David S. Wendler","orcid":"https://orcid.org/0000-0002-9359-4439","observed_orcids":["https://orcid.org/0000-0002-9359-4439"]},"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/I4210155647","display_name":"National Institutes of Health Clinical Center","ror":"https://ror.org/04vfsmv21","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1299022934","https://openalex.org/I1299303238","https://openalex.org/I4210155647"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"David Wendler","raw_affiliation_strings":["Department of Clinical Bioethics,
 Warren G. Magnuson Clinical Center
 National Institutes of Health
 Bethesda, MD 20892"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Clinical Bioethics,
 Warren G. Magnuson Clinical Center
 National Institutes of Health
 Bethesda, MD 20892","institution_ids":["https://openalex.org/I1299303238","https://openalex.org/I4210155647"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":2,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":1.6891,"has_fulltext":false,"cited_by_count":29,"citation_normalized_percentile":{"value":0.84073543,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":89,"max":98},"biblio":{"volume":"114","issue":"3","first_page":"852","last_page":"855"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10582","display_name":"Ethics in Clinical Research","score":0.6449999809265137,"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/T10582","display_name":"Ethics in Clinical Research","score":0.6449999809265137,"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":0.22709999978542328,"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/T14437","display_name":"Ethics and Legal Issues in Pediatric Healthcare","score":0.06019999831914902,"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/palliative-care","display_name":"palliative care","score":0.9089999794960022},{"id":"https://openalex.org/keywords/pediatric-oncology","display_name":"pediatric oncology","score":0.8640000224113464},{"id":"https://openalex.org/keywords/anticancer-agents","display_name":"anticancer agents","score":0.7799999713897705},{"id":"https://openalex.org/keywords/clinical-trial-enrollment","display_name":"clinical trial recruitment","score":0.42100000381469727},{"id":"https://openalex.org/keywords/research-ethics","display_name":"research ethics","score":0.5870000123977661},{"id":"https://openalex.org/keywords/end-of-life-care","display_name":"end-of-life care","score":0.6930000185966492},{"id":"https://openalex.org/keywords/integrated-palliative-care","display_name":"palliative care integration","score":0.625},{"id":"https://openalex.org/keywords/informed-consent","display_name":"informed consent","score":0.5170000195503235},{"id":"https://openalex.org/keywords/family-decision-making","display_name":"family decision-making","score":0.6380000114440918},{"id":"https://openalex.org/keywords/maximum-tolerated-dose","display_name":"maximum tolerated dose","score":0.6869999766349792},{"id":"https://openalex.org/keywords/drug-safety-and-tolerability","display_name":"drug safety and tolerability","score":0.6010000109672546},{"id":"https://openalex.org/keywords/terminally-ill-children","display_name":"terminally ill children","score":0.47099998593330383},{"id":"https://openalex.org/keywords/pharmacokinetics","display_name":"pharmacokinetics","score":0.5139999985694885},{"id":"https://openalex.org/keywords/antitumor-efficacy","display_name":"antitumor efficacy","score":0.8289999961853027}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.9314401745796204},{"id":"https://openalex.org/C2778375690","wikidata":"https://www.wikidata.org/wiki/Q7814214","display_name":"Tolerability","level":3,"score":0.7648084163665771},{"id":"https://openalex.org/C535046627","wikidata":"https://www.wikidata.org/wiki/Q30612","display_name":"Clinical trial","level":2,"score":0.7643004059791565},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.5749297142028809},{"id":"https://openalex.org/C2993561819","wikidata":"https://www.wikidata.org/wiki/Q5097977","display_name":"Pediatric cancer","level":3,"score":0.5441864132881165},{"id":"https://openalex.org/C2909143077","wikidata":"https://www.wikidata.org/wiki/Q5097977","display_name":"Pediatric oncology","level":3,"score":0.5191646814346313},{"id":"https://openalex.org/C2908647359","wikidata":"https://www.wikidata.org/wiki/Q2625603","display_name":"Population","level":2,"score":0.4862278997898102},{"id":"https://openalex.org/C121608353","wikidata":"https://www.wikidata.org/wiki/Q12078","display_name":"Cancer","level":2,"score":0.4644809663295746},{"id":"https://openalex.org/C143998085","wikidata":"https://www.wikidata.org/wiki/Q162555","display_name":"Oncology","level":1,"score":0.35192376375198364},{"id":"https://openalex.org/C197934379","wikidata":"https://www.wikidata.org/wiki/Q2047938","display_name":"Adverse effect","level":2,"score":0.3047678470611572},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.2547435760498047},{"id":"https://openalex.org/C99454951","wikidata":"https://www.wikidata.org/wiki/Q932068","display_name":"Environmental health","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D000970","descriptor_name":"Antineoplastic Agents","qualifier_ui":"Q000627","qualifier_name":"therapeutic use","is_major_topic":false},{"descriptor_ui":"D000970","descriptor_name":"Antineoplastic Agents","qualifier_ui":"Q000627","qualifier_name":"therapeutic use","is_major_topic":false},{"descriptor_ui":"D000970","descriptor_name":"Antineoplastic Agents","qualifier_ui":"Q000627","qualifier_name":"therapeutic use","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":"D002648","descriptor_name":"Child","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":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D009369","descriptor_name":"Neoplasms","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":false},{"descriptor_ui":"D009369","descriptor_name":"Neoplasms","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":false},{"descriptor_ui":"D009369","descriptor_name":"Neoplasms","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":false},{"descriptor_ui":"D010166","descriptor_name":"Palliative Care","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D010166","descriptor_name":"Palliative Care","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D010166","descriptor_name":"Palliative Care","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D010290","descriptor_name":"Parents","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010290","descriptor_name":"Parents","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D010290","descriptor_name":"Parents","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":false},{"descriptor_ui":"D013727","descriptor_name":"Terminal Care","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":false},{"descriptor_ui":"D017321","descriptor_name":"Clinical Trials, Phase I as Topic","qualifier_ui":"Q000379","qualifier_name":"methods","is_major_topic":false},{"descriptor_ui":"D017321","descriptor_name":"Clinical Trials, Phase I as Topic","qualifier_ui":"Q000379","qualifier_name":"methods","is_major_topic":false},{"descriptor_ui":"D017321","descriptor_name":"Clinical Trials, Phase I as Topic","qualifier_ui":"Q000379","qualifier_name":"methods","is_major_topic":false},{"descriptor_ui":"D017321","descriptor_name":"Clinical Trials, Phase I as Topic","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D017321","descriptor_name":"Clinical Trials, Phase I as Topic","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D017321","descriptor_name":"Clinical Trials, Phase I as Topic","qualifier_ui":"Q000941","qualifier_name":"ethics","is_major_topic":false},{"descriptor_ui":"D018579","descriptor_name":"Patient Selection","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D018579","descriptor_name":"Patient Selection","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D018579","descriptor_name":"Patient Selection","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":2,"locations":[{"id":"doi:10.1542/peds.2003-0913-l","doi":"https://doi.org/10.1542/peds.2003-0913-l","is_oa":false,"landing_page_url":"https://doi.org/10.1542/peds.2003-0913-l","pdf_url":null,"source":{"id":"https://openalex.org/S77494981","display_name":"PEDIATRICS","issn_l":"0031-4005","issn":["0031-4005","1098-4275"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-class-a","anvur-scientific","cwts-core","dongbi-a","doyens","erih-plus","jufo-3","ki-jl-3","medline","norway-2","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310315734","host_organization_name":"American Academy of Pediatrics","host_organization_lineage":["https://openalex.org/P4310315734"],"host_organization_lineage_names":["American Academy of Pediatrics"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Pediatrics","raw_type":"journal-article"},{"id":"pmid:15342863","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/15342863","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":"Pediatrics","raw_type":"Journal Article"}],"best_oa_location":null,"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":0.98580002784729}],"sustainable_development_goals_aurora":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":0.6399999856948853}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":22,"referenced_works":["https://openalex.org/W118108434","https://openalex.org/W1880913164","https://openalex.org/W1922842186","https://openalex.org/W1977313198","https://openalex.org/W1978327547","https://openalex.org/W1984490374","https://openalex.org/W2020352568","https://openalex.org/W2041164460","https://openalex.org/W2048268191","https://openalex.org/W2081197785","https://openalex.org/W2086533029","https://openalex.org/W2086822078","https://openalex.org/W2092782736","https://openalex.org/W2126551611","https://openalex.org/W2150060517","https://openalex.org/W2160602782","https://openalex.org/W2199330370","https://openalex.org/W2262691950","https://openalex.org/W2328550201","https://openalex.org/W2410902232","https://openalex.org/W4213030688","https://openalex.org/W4254617312"],"related_works":["https://openalex.org/W2083445393","https://openalex.org/W2940981319","https://openalex.org/W6959514570","https://openalex.org/W7116948755","https://openalex.org/W1977313198","https://openalex.org/W7215041363","https://openalex.org/W2788828598","https://openalex.org/W2227444605","https://openalex.org/W2148198302","https://openalex.org/W2939449925"],"abstract_inverted_index":{"Hampering":[0],"enrollment":[1,205,331,403,638],"of":[2,14,41,50,69,78,90,98,151,174,214,230,268,386,394,425,428,447,452,501,534,557,595,624,678,685,725,749,752,762,781,828,867,884,892,948,986,992,1005,1015,1018,1024,1029,1037,1050,1069,1087,1092,1103,1108,1132,1140,1158,1191,1218,1225,1293,1307,1342,1363,1384,1403,1424,1463,1484,1491,1546,1556,1576,1602,1612,1622,1635,1649,1693,1714,1728,1747,1772,1801,1831,1842,1845,1875,1883,1903,1906,1934,1959,1992],"children":[3,114,164,236,701,935,996,1560,1736,1776,1825,1849,1962],"to":[4,16,20,64,84,93,144,180,193,203,220,275,282,294,382,401,459,467,476,515,552,612,632,657,674,695,721,787,794,831,855,875,907,970,979,1094,1142,1163,1176,1187,1237,1254,1304,1328,1353,1365,1377,1420,1453,1566,1627,1717,1766,1826,1839],"phase":[5,80,118,134,182,186,208,298,360,406,480,536,604,635,704,726,757,954,1150,1202,1396,1440,1580,1640,1700,1750,1854],"I":[6,81,119,135,183,187,209,299,361,407,481,537,605,636,705,727,758,955,1151,1203,1397,1441,1581,1641,1701,1751,1855],"oncology":[7,710,759,1856],"research":[8,322,334,416,477,744,830,894,1045,1173,1267,1312,1344,1428,1471,1478,1494,1568,1586,1618,1673,1682,1694,1733,1785,1818,1836,1912],"would":[9,486,1929],"dramatically":[10],"impair":[11],"the":[12,25,39,61,66,86,95,99,103,133,149,152,158,212,221,253,258,277,333,384,392,426,450,505,513,523,532,547,555,561,564,588,592,625,675,679,682,698,732,772,779,796,808,825,829,842,865,871,873,885,889,893,927,941,958,980,983,1003,1016,1022,1027,1048,1118,1130,1168,1172,1213,1219,1250,1252,1262,1271,1278,1339,1343,1355,1361,1382,1400,1412,1427,1448,1461,1470,1481,1550,1553,1570,1574,1592,1607,1633,1647,1671,1681,1686,1691,1722,1726,1738,1745,1768,1799,1816,1843,1873,1904,1935,1957,1975],"ability":[13],"investigators":[15,128,323,512,711],"develop":[17],"new":[18,42,518,805],"treatments":[19,70],"improve":[21,148,1670,1718],"medical":[22,1367],"care":[23,340,353,387,411,431,444,471,508,541,648,715,993,1011,1040,1052,1098,1110,1147,1210,1243,1284,1294,1347,1406,1466,1486,1492,1667,1800,1813,1874,1908],"for":[24,38,71,163,255,341,417,461,597,603,692,700,802,814,844,963,989,1193,1222,1244,1273,1359,1369,1451,1457,1493,1559,1606,1619,1721,1775,1791,1864,1926,1956,1974,1986],"pediatric":[26,32,72,126,185,207,405,490,535,709,1009,1038,1070,1080,1149,1370,1404,1639,1723,1900,1911],"cancer":[27,116,167,1371,1526,1562,1719,1779,1968],"population.":[28,1724],"The":[29,74],"variability":[30],"in":[31,117,132,206,296,320,332,388,391,396,404,423,703,713,756,771,847,926,1002,1059,1072,1079,1208,1227,1467,1617,1737,1749,1758,1783,1798,1853,1910,1920,1944,1967],"tumor":[33,845,850],"response":[34,195],"indicates":[35],"a":[36,79,177,191,231,265,297,345,456,558,567,650,655,746,776,803,815,848,908,918,1035,1076,1090,1106,1127,1138,1156,1165,1189,1233,1274,1325,1431,1488,1523,1620,1931,1954],"need":[37,424],"development":[40],"anticancer":[43],"agents":[44,1716],"that":[45,56,130,314,373,520,531,569,667,740,765,835,851,995,1066,1171,1196,1438,1519,1590,1632,1790],"specifically":[46],"target":[47],"varying":[48],"histologies":[49],"malignancies.1":[51],"Aleska":[52],"and":[53,88,101,168,216,245,251,271,301,309,324,336,370,436,441,454,492,549,563,576,582,586,639,716,737,819,881,888,917,925,1034,1044,1115,1137,1153,1179,1206,1215,1230,1241,1249,1259,1266,1282,1297,1316,1321,1345,1532,1534,1599,1610,1624,1665,1689,1711,1741,1755,1761,1770,1823,1847,1862,1872,1880,1885,1899,1922,1938,1963,1983],"Koren":[54],"argue":[55],"\u201cclinical":[57],"trials":[58,120,136,188,210,225,408,482,538,606,706,956,1398,1442,1582,1703,1913],"may":[59,199,226,262,292,304,521,644,688,719,741,823,836,859,899,943,967,1160,1185,1211,1231,1269,1349,1436,1446,1527,1542,1563,1595,1651],"be":[60,200,422,689,837,860,901,945,968,1161,1393,1409,1447,1652],"only":[62,159,488,900,1067,1101,1449,1571],"way":[63,400],"determine":[65,591,1827],"appropriate":[67],"types":[68,1601],"cancer.\u201d2":[73],"primary":[75],"scientific":[76,1732,1759,1976],"objectives":[77],"trial":[82,300,335,362,637,774,1174,1429,1472,1594,1642],"are":[83,111,141,218,921,1583,1625,1764,1781,1795,1851],"assess":[85],"safety":[87],"tolerability":[89],"tested":[91],"agents,":[92],"identify":[94],"maximum-tolerated":[96],"dose":[97],"drug,":[100],"characterize":[102],"drug's":[104],"pharmacokinetics.1,3\u20138":[105],"Secondarily,":[106],"preliminary":[107],"antitumor":[108],"efficacy":[109],"data":[110,1020],"sought.1,3\u20138However,":[112],"enrolling":[113,395],"with":[115,165,237,359,376,409,483,504,539,572,731,810,878,1083,1112,1117,1148,1295,1399,1443,1469,1522,1561,1579,1638,1680,1699,1777,1869,1941,1946],"raises":[121],"important":[122,172,313],"ethical":[123,1696,1753],"concerns.":[124],"Although":[125,896],"clinical":[127,773,886,1043,1263,1593,1702,1947,1969],"hope":[129,175,502],"participation":[131,755,1643],"will":[137,420,1704,1734],"help":[138,720],"subjects,":[139],"they":[140,156,327,766,966,976,1391],"not":[142,355,380,487,630,645,768,785,1055,1198,1392,1512,1645,1658],"meant":[143],"cure":[145,816,978,1192],"or":[146,338,351,526,615,654,664,671,799,1123,1660],"even":[147,264],"condition":[150],"child.":[153,343,599,680,1459],"Usually,":[154],"however,":[155,474],"offer":[157,204,489],"remaining":[160],"treatment":[161,783,793,961,1720],"option":[162,498,962],"advanced":[166,1525,1778],"thereby":[169],"provide":[170,658,1221,1232,1487,1930],"an":[171,318,366,665,1095,1474,1876],"source":[173],"at":[176,449,587,905,1833],"difficult":[178,581],"time.Similar":[179],"adult":[181],"trials,":[184,728,760,1752,1857,1970],"generally":[189],"have":[190,381,631,937,1054],"5%":[192],"8%":[194],"rate.1,3\u20138":[196],"Thus,":[197],"it":[198,545,1510,1656],"questionably":[201],"unreasonable":[202],"because":[211,778,1014],"likelihood":[213,267,1746],"risk":[215,1884],"discomfort":[217],"disproportionate":[219],"marginal":[222],"benefit.":[223],"These":[224],"raise":[227],"unrealistic":[228,1120,1337],"hopes":[229],"cure,":[232],"burden":[233,684],"already":[234],"sick":[235],"potentially":[238,804],"invasive":[239],"procedures,":[240],"compound":[241],"suffering":[242,974,1380],"through":[243,1201,1381,1731],"chemotherapeutic":[244],"other":[246,259,821,1535,1551,1600],"associated":[247,730,1521,1536,1578,1679,1698,1868,1940],"drug":[248],"side":[249],"effects,":[250],"limit":[252],"opportunity":[254,514,874,1253],"palliation.":[256],"On":[257,1549],"hand,":[260,1552],"families":[261,291,494,952,1299,1419,1565,1965],"perceive":[263,646,824],"low":[266],"benefit":[269,522,659,942,1170,1735,1748,1860],"favorably,":[270],"ethically":[272],"we":[273,315,1707,1820,1952],"ought":[274],"respect":[276],"family's":[278,1119],"prima":[279],"facie":[280],"right":[281,548],"make":[283],"this":[284,302,365,497,622,910,1422,1505,1950,1993],"determination.":[285],"As":[286,1182],"Ackerman":[287],"notes":[288],"\u201cadequately":[289],"informed":[290],"choose":[293,329,415,496,633,1567],"participate":[295,1616],"decision":[303],"genuinely":[305],"reflect":[306],"their":[307,342,418,493,598,608,753,811,964,972,1006,1073,1113,1154,1194,1256,1298,1458,1824,1828,1848,1859,1881,1917,1964],"values":[308],"goals.\u201d8It":[310],"is":[311,354,465,472,529,546,570,610,707,911,1197,1324,1498,1511,1516,1657,1788],"equally":[312],"should":[316,379,629,1390,1408,1417,1837,1894],"avoid":[317],"environment":[319,887],"which":[321],"parents":[325,628,643,694,763,1184,1248,1452,1822,1846],"believe":[326,1509,1631],"must":[328,579],"between":[330,634,1277],"palliative":[337,350,389,410,430,484,540,640,647,714,999,1010,1039,1097,1135,1144,1180,1209,1346,1405,1432,1444,1455,1464,1485,1557,1588,1636,1666,1773,1812,1891,1907,1942],"end-of-life":[339,352,507,1060,1146,1228,1804],"Does":[344],"false":[346],"dichotomy":[347],"exist":[348],"whereby":[349],"perceived":[356],"as":[357,649,662,775,841,864,951,957,975,1126,1334,1336,1373,1375,1569,1706,1890,1914,1916,1971,1973],"compatible":[358],"participation?9":[363],"Is":[364],"artificial":[367],"problem?":[368],"Agrawal":[369],"Danis":[371],"contend":[372],"\u201cresearch":[374],"subjects":[375],"terminal":[377,1081],"illness":[378,556],"forgo":[383],"standard":[385,613,1490],"medicine":[390],"course":[393,594,1078,1268,1674,1830],"research.\u201d9Is":[397],"there":[398],"some":[399,499,693,1223,1435,1545],"combine":[402],"services?":[412],"Families":[413],"who":[414,495,936,1780,1794,1850],"child":[419,525,559,565,872,1195,1251],"still":[421,912],"components":[427],"comprehensive":[429],"including":[432,1858],"psychosocial":[433,738,1866],"support,":[434],"symptom":[435,1177],"pain":[437,717,1597],"management,":[438],"spiritual":[439],"comfort,":[440],"counseling.10":[442],"Palliative":[443,470],"addresses":[445],"quality":[446,947,1242,1385,1611],"life":[448,453,798],"end":[451,1131],"represents":[455,1175],"holistic":[457],"approach":[458],"caring":[460],"patients":[462,491,1114,1296,1372],"whose":[463],"disease":[464,609,735,920],"refractory":[466,611,854],"curative":[468,618],"measures.":[469],"not,":[473],"inimical":[475],"participation.10":[478],"Combining":[479],"services":[485,542,1000,1589,1909,1925,1943],"chance":[500],"along":[503],"best":[506,593,930,1356,1829],"but":[509,660,1508],"also":[510,1543,1895],"afford":[511],"test":[516],"potential":[517,723,1169],"therapies":[519,1368],"enrolled":[524,702,1782,1852,1966],"future":[527],"children.11,12It":[528],"arguable":[530],"combination":[533,1468,1634,1945],"seems":[543],"virtuous;":[544],"good":[550],"thing":[551],"do.":[553],"Certainly":[554],"thrusts":[560],"parent(s)":[562],"into":[566,1477],"situation":[568],"fraught":[571],"uncertainty,":[573],"emotional":[574,1330],"unrest,":[575],"confusion.":[577],"Parents":[578],"absorb":[580],"often":[583],"devastating":[584],"information":[585],"same":[589],"time":[590,809,877,898],"action":[596,1832],"Children":[600],"become":[601],"eligible":[602],"when":[607,616],"therapy":[614,619],"no":[617,782],"exists.1,3\u20138":[620],"Given":[621],"stage":[623,1272],"child's":[626,733,797,928,973,1524,1608,1672,1817],"illness,":[627],"support.":[641],"However,":[642,950,1008,1808],"direct":[651,1742],"interventional":[652],"measure":[653],"means":[656],"instead":[661],"inferior":[663],"alternative":[666,780],"suggests":[668],"\u201cgiving":[669,672,686],"up\u201d":[670,687],"in\u201d":[673],"imminent":[676],"death":[677],"Additionally,":[681],"psychological":[683],"too":[690],"great":[691],"consider.":[696],"Because":[697],"outcome":[699],"uncertain,":[708],"skilled":[712],"management":[718,1178,1575,1598],"address":[722,1596,1767],"risks":[724],"symptoms":[729,1520],"progressive":[734],"process,":[736],"concerns":[739,1260],"arise":[742],"during":[743,1426],"enrollment.In":[745],"recent":[747],"study":[748,1074],"parental":[750],"perceptions":[751,1306,1844,1902],"children's":[754,1729],"62%":[761],"indicated":[764],"did":[767],"define":[769],"participating":[770],"decision,":[777],"was":[784],"acceptable":[786],"them.":[788],"Their":[789],"expectations":[790,1121,1217,1861],"included":[791],"providing":[792],"prolong":[795],"\u201cbuying":[800],"time\u201d":[801],"therapy,":[806],"prolonging":[807],"child,":[812,965,1279],"hoping":[813],"and/or":[817,1145,1331],"miracle,":[818],"helping":[820],"children.13Parents":[822],"slightest":[826],"benefits":[827],"include":[832,1528,1544],"those":[833],"effects":[834],"immediately":[838],"tangible":[839],"such":[840,863,1889],"possibility":[843],"regression":[846,916],"solid":[849],"has":[852],"been":[853,1056],"previous":[856],"treatment.":[857],"Benefit":[858],"more":[861],"elusive,":[862],"value":[866],"added":[868],"time,":[869],"allowing":[870],"spend":[876],"his/her":[879],"family":[880,1280],"friends":[882],"outside":[883],"daily":[890],"regimen":[891],"protocol.":[895],"survival":[897,1030],"minimally":[902],"prolonged,":[903],"if":[904,1430],"all,":[906],"parent,":[909],"cherished":[913],"time.":[914],"Tumor":[915],"stable":[919],"beneficial":[922],"goals,":[923],"therapeutic,":[924],"immediate":[929,1340],"interest.":[931],"For":[932],"terminally":[933,1960],"ill":[934,1878,1961],"experienced":[938],"multiple":[939],"relapses,":[940],"simply":[944],"improved":[946],"life.":[949,1133,1613],"consider":[953],"last":[959],"available":[960,1096,1886],"unable":[969],"acknowledge":[971,1978],"pursue":[977],"end.14In":[981],"2000,":[982],"American":[984],"Academy":[985],"Pediatrics":[987],"called":[988],"integrated":[990],"models":[991],"so":[994],"can":[997,1669],"receive":[998,1454],"early":[1001],"process":[1004],"illness.15":[1007],"remains":[1012],"fragmented":[1013],"lack":[1017,1036,1091,1139],"empirical":[1019],"surrounding":[1021],"effectiveness":[1023],"these":[1025,1245,1547,1784,1802,1924],"services,":[1026],"unpredictability":[1028],"estimates,":[1031],"reimbursement":[1032],"issues,":[1033],"expertise":[1041],"within":[1042],"facilities.15":[1046],"Unfortunately,":[1047],"majority":[1049],"health":[1051,1283,1730],"professionals":[1053],"formally":[1057],"trained":[1058],"care.16":[1061],"Hilden":[1062],"et":[1063,1288],"al16":[1064],"reported":[1065],"10%":[1068],"oncologists":[1071,1088],"had":[1075],"formal":[1077],"care,":[1082,1309],"nearly":[1084],"half":[1085],"(48.3%)":[1086],"reporting":[1089],"access":[1093,1421],"team.":[1099],"Moreover,":[1100],"53%":[1102],"respondents":[1104],"initiated":[1105],"discussion":[1107],"advance":[1109,1239,1366],"preferences":[1111],"families,":[1116,1155],"\u201calways":[1122],"often\u201d":[1124],"cited":[1125],"factor":[1128],"affecting":[1129],"Without":[1134],"support":[1136,1407,1425,1445,1456,1483,1558,1637,1814],"training":[1141],"discuss":[1143,1238],"participants":[1152,1495],"\u201cwindow":[1157],"opportunity\u201d":[1159],"lost":[1162],"ensure":[1164],"transition":[1166],"from":[1167],"care.":[1181,1318,1387,1892],"such,":[1183],"continue":[1186],"embrace":[1188],"goal":[1190],"likely":[1199],"obtainable":[1200],"research.Investigator":[1204],"competency":[1205],"skills":[1207],"impact":[1212],"patient":[1214],"parents'":[1216],"trial,":[1220],"sense":[1224],"control":[1226],"decision-making,":[1229],"nonjudgmental,":[1234],"supportive":[1235,1465,1603,1887],"climate":[1236],"directives":[1240],"children.":[1246,1927],"Affording":[1247],"share":[1255],"experiences,":[1257],"fears,":[1258],"about":[1261],"diagnosis,":[1264],"prognosis,":[1265],"set":[1270],"trusting":[1275],"relationship":[1276],"members,":[1281],"providers.":[1285],"von":[1286],"Gunten":[1287],"al17":[1289],"suggest":[1290],"setting":[1291],"goals":[1292,1341],"by":[1300,1585,1675,1809],"asking":[1301],"open-ended":[1302],"questions":[1303],"elicit":[1305],"aggressive":[1308],"life-sustaining":[1310],"measures,":[1311],"termination,":[1313],"hospice":[1314],"options,":[1315],"bereavement":[1317],"Consistent,":[1319],"frequent,":[1320],"honest":[1322,1740],"communication":[1323,1743],"key":[1326],"component":[1327],"allaying":[1329],"physical":[1332],"distress":[1333],"well":[1335,1374,1513,1517,1915,1972],"expectations.Although":[1338],"teams":[1348],"conflict,":[1350],"both":[1351],"seek":[1352],"achieve":[1354],"possible":[1357,1506],"outcomes":[1358,1939],"children:":[1360],"generation":[1362],"knowledge":[1364],"interventions":[1376],"lessen":[1378],"concomitant":[1379],"provision":[1383],"compassionate":[1386],"Why,":[1388],"then,":[1389],"combined?":[1394],"Designing":[1395],"concurrent":[1401],"use":[1402],"considered.":[1410],"At":[1411],"very":[1413],"least,":[1414],"every":[1415],"researcher":[1416],"encourage":[1418],"type":[1423],"service":[1433],"exists.Nonetheless,":[1434],"challenge":[1437],"combining":[1439],"avenue":[1450],"Would":[1460,1480],"availability":[1462],"create":[1473],"undue":[1475,1654],"influence":[1476,1564],"participation?":[1479],"additional":[1482],"superior":[1489],"than":[1496],"what":[1497,1650],"currently":[1499],"provided":[1500],"off":[1501],"protocol?18":[1502],"We":[1503,1630],"present":[1504],"objection":[1507],"founded.":[1514],"It":[1515,1787],"documented":[1518],"pain,":[1529],"fatigue,":[1530],"nausea":[1531],"vomiting,":[1533],"maladies;":[1537],"similarly,":[1538],"drug-related":[1539],"nonhematological":[1540],"toxicities":[1541,1577],"symptoms.19,20":[1548],"current":[1554],"paucity":[1555],"\u201cactive\u201d":[1572],"option.Although":[1573],"dictated":[1584],"protocol,":[1587],"augment":[1591],"measures":[1604,1774],"imperative":[1605],"comfort":[1609,1918],"Second,":[1614],"individuals":[1615],"myriad":[1621],"reasons":[1623,1863],"subject":[1626],"many":[1628],"influences.21,22":[1629],"does":[1644],"exceed":[1646],"threshold":[1648],"considered":[1653],"influence:":[1655],"excessive":[1659],"inappropriate.":[1661],"Working":[1662],"together,":[1663],"researchers":[1664],"specialists":[1668],"identifying":[1676],"divergent":[1677],"views":[1678],"aims,":[1683],"continuously":[1684],"examining":[1685],"risk/benefit":[1687],"ratio,":[1688],"evaluating":[1690],"feasibility":[1692],"continuation.The":[1695],"complexities":[1697],"remain":[1705,1806],"carefully":[1708],"establish":[1709],"safe":[1710],"tolerable":[1712],"doses":[1713],"investigational":[1715],"Influencing":[1725],"direction":[1727],"future;":[1739],"regarding":[1744],"reflection":[1754],"sensitivity,":[1756],"creativity":[1757],"design,":[1760],"multidisciplinary":[1762],"approaches":[1763],"needed":[1765],"importance":[1769],"inclusion":[1771],"trials.":[1786,1948],"undeniable":[1789],"all":[1792],"parties":[1793],"intimately":[1796],"involved":[1797],"children,":[1803],"issues":[1805,1867],"difficult.":[1807],"explicitly":[1810],"incorporating":[1811],"throughout":[1815],"course,":[1819],"assist":[1821],"each":[1834],"stage.Ongoing":[1835],"strive":[1838],"enhance":[1840],"understanding":[1841,1882,1933],"enrollment;":[1865],"complex":[1870],"decision-making":[1871],"incurably":[1877],"child;":[1879],"options":[1888],"Research":[1893],"focus":[1896],"on":[1897,1989],"researchers'":[1898],"oncologists'":[1901],"role":[1905],"level":[1919],"discussing":[1921],"accessing":[1923],"This":[1928],"better":[1932],"benefit,":[1936],"use,":[1937],"To":[1949],"end,":[1951],"open":[1953],"dialogue":[1955],"betterment":[1958],"community.We":[1977],"Manish":[1979],"Agrawal,":[1980],"Gwenyth":[1981],"Wallen,":[1982],"Janet":[1984],"Deatrick":[1985],"thoughtful":[1987],"comments":[1988],"earlier":[1990],"versions":[1991],"manuscript.":[1994]},"counts_by_year":[{"year":2026,"cited_by_count":2},{"year":2025,"cited_by_count":2},{"year":2022,"cited_by_count":1},{"year":2020,"cited_by_count":2},{"year":2018,"cited_by_count":5},{"year":2017,"cited_by_count":2},{"year":2016,"cited_by_count":3}],"updated_date":"2026-10-27T15:51:10.671819","created_date":"2016-06-24T00:00:00"}