{"id":"https://openalex.org/W2559412952","doi":"https://doi.org/10.1002/pbc.26374","title":"Development of quality indicators for transition from pediatric to adult care in sickle cell disease: A modified Delphi survey of adult providers","display_name":"Development of quality indicators for transition from pediatric to adult care in sickle cell disease: A modified Delphi survey of adult providers","publication_year":2016,"publication_date":"2016-12-01","ids":{"openalex":"https://openalex.org/W2559412952","doi":"https://doi.org/10.1002/pbc.26374","mag":"2559412952","pmid":"https://pubmed.ncbi.nlm.nih.gov/27905689"},"language":"en","primary_location":{"id":"doi:10.1002/pbc.26374","doi":"https://doi.org/10.1002/pbc.26374","is_oa":false,"landing_page_url":"https://doi.org/10.1002/pbc.26374","pdf_url":null,"source":{"id":"https://openalex.org/S119714264","display_name":"Pediatric Blood & Cancer","issn_l":"1545-5009","issn":["1545-5009","1545-5017"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-c","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Pediatric Blood & Cancer","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/A5032982531","display_name":"Amy E. Sobota","orcid":"https://orcid.org/0000-0003-3979-7435","observed_orcids":["https://orcid.org/0000-0003-3979-7435"]},"institutions":[{"id":"https://openalex.org/I111088046","display_name":"Boston University","ror":"https://ror.org/05qwgg493","country_code":"US","type":"education","lineage":["https://openalex.org/I111088046"]},{"id":"https://openalex.org/I1286490081","display_name":"Boston Medical Center","ror":"https://ror.org/010b9wj87","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1286490081"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Amy E. Sobota","raw_affiliation_strings":["Boston University School of Medicine, Boston, Massachusetts","Department of Pediatrics, Boston Medical Center, Boston, Massachusetts"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Boston University School of Medicine, Boston, Massachusetts","institution_ids":["https://openalex.org/I111088046"]},{"raw_affiliation_string":"Department of Pediatrics, Boston Medical Center, Boston, Massachusetts","institution_ids":["https://openalex.org/I1286490081"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5000233281","display_name":"Nishita Shah","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I111088046","display_name":"Boston University","ror":"https://ror.org/05qwgg493","country_code":"US","type":"education","lineage":["https://openalex.org/I111088046"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Nishita Shah","raw_affiliation_strings":["Boston University School of Public Health, Boston, Massachusetts"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Boston University School of Public Health, Boston, Massachusetts","institution_ids":["https://openalex.org/I111088046"]}]},{"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/I136199984","display_name":"Harvard University","ror":"https://ror.org/03vek6s52","country_code":"US","type":"education","lineage":["https://openalex.org/I136199984"]},{"id":"https://openalex.org/I4210166317","display_name":"Dana-Farber/Boston Children's Cancer and Blood Disorders Center","ror":"https://ror.org/05k11pb55","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1288882113","https://openalex.org/I4210117453","https://openalex.org/I4210166317"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Jennifer W. Mack","raw_affiliation_strings":["Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts","Harvard Medical School, Boston, Massachusetts"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, Massachusetts","institution_ids":["https://openalex.org/I4210166317"]},{"raw_affiliation_string":"Harvard Medical School, Boston, Massachusetts","institution_ids":["https://openalex.org/I136199984"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":4,"corresponding_author_ids":["https://openalex.org/A5032982531"],"corresponding_institution_ids":["https://openalex.org/I111088046","https://openalex.org/I1286490081"],"apc_list":{"value":4640,"currency":"USD","value_usd":4640},"apc_paid":null,"fwci":7.489,"has_fulltext":false,"cited_by_count":39,"citation_normalized_percentile":{"value":0.96558536,"is_in_top_1_percent":false,"is_in_top_10_percent":true},"cited_by_percentile_year":{"min":88,"max":99},"biblio":{"volume":"64","issue":"6","first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.9984999895095825,"subfield":{"id":"https://openalex.org/subfields/3616","display_name":"Speech and Hearing"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.9984999895095825,"subfield":{"id":"https://openalex.org/subfields/3616","display_name":"Speech and Hearing"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":0.0005000000237487257,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"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/T12174","display_name":"Hospital Admissions and Outcomes","score":0.00019999999494757503,"subfield":{"id":"https://openalex.org/subfields/2711","display_name":"Emergency Medicine"},"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/sickle-cell-disease","display_name":"sickle cell disease","score":1.0},{"id":"https://openalex.org/keywords/care-transitions","display_name":"care transitions","score":0.7429999709129333},{"id":"https://openalex.org/keywords/transition-to-adult-care","display_name":"transition to adult care","score":0.9580000042915344},{"id":"https://openalex.org/keywords/quality-indicators","display_name":"quality indicators","score":0.9909999966621399},{"id":"https://openalex.org/keywords/young-adults","display_name":"young adults","score":0.6679999828338623},{"id":"https://openalex.org/keywords/expert-consensus","display_name":"expert consensus","score":0.5830000042915344},{"id":"https://openalex.org/keywords/patient-self-efficacy","display_name":"patient self-efficacy","score":0.9549999833106995},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"quality of life","score":0.7670000195503235}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.8385146856307983},{"id":"https://openalex.org/C60641444","wikidata":"https://www.wikidata.org/wiki/Q841602","display_name":"Delphi method","level":2,"score":0.7262646555900574},{"id":"https://openalex.org/C2909537177","wikidata":"https://www.wikidata.org/wiki/Q4685925","display_name":"Adult care","level":3,"score":0.6533682346343994},{"id":"https://openalex.org/C205545832","wikidata":"https://www.wikidata.org/wiki/Q17156455","display_name":"Young adult","level":2,"score":0.6094340085983276},{"id":"https://openalex.org/C2779530757","wikidata":"https://www.wikidata.org/wiki/Q1207505","display_name":"Quality (philosophy)","level":2,"score":0.5407455563545227},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.5117068290710449},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.5005638599395752},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.46872034668922424},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.44200462102890015},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.38304615020751953},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.349724680185318},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.21410802006721497},{"id":"https://openalex.org/C33923547","wikidata":"https://www.wikidata.org/wiki/Q395","display_name":"Mathematics","level":0,"score":0.0},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.0},{"id":"https://openalex.org/C111472728","wikidata":"https://www.wikidata.org/wiki/Q9471","display_name":"Epistemology","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/C199539241","wikidata":"https://www.wikidata.org/wiki/Q7748","display_name":"Law","level":1,"score":0.0},{"id":"https://openalex.org/C105795698","wikidata":"https://www.wikidata.org/wiki/Q12483","display_name":"Statistics","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}],"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":"D000755","descriptor_name":"Anemia, Sickle Cell","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D000755","descriptor_name":"Anemia, Sickle Cell","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D002675","descriptor_name":"Child, Preschool","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D007223","descriptor_name":"Infant","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":"D019058","descriptor_name":"Community Networks","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D019984","descriptor_name":"Quality Indicators, Health Care","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true}],"locations_count":2,"locations":[{"id":"doi:10.1002/pbc.26374","doi":"https://doi.org/10.1002/pbc.26374","is_oa":false,"landing_page_url":"https://doi.org/10.1002/pbc.26374","pdf_url":null,"source":{"id":"https://openalex.org/S119714264","display_name":"Pediatric Blood & Cancer","issn_l":"1545-5009","issn":["1545-5009","1545-5017"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-c","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-100","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320595","host_organization_name":"Wiley","host_organization_lineage":["https://openalex.org/P4310320595"],"host_organization_lineage_names":["Wiley"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Pediatric Blood & Cancer","raw_type":"journal-article"},{"id":"pmid:27905689","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/27905689","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":"Pediatric blood & cancer","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":1.0}],"study_designs":[{"display_name":"Observational Study","id":"https://openalex.org/study-designs/observational-study"}],"awards":[{"id":"https://openalex.org/G365555829","display_name":"Clinical Hematology Research Career Development Award","funder_award_id":"K12HL087164","funder_id":"https://openalex.org/F4320337338","funder_display_name":"National Heart, Lung, and Blood Institute"}],"funders":[{"id":"https://openalex.org/F4320337338","display_name":"National Heart, Lung, and Blood Institute","ror":"https://ror.org/012pb6c26"}],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":41,"referenced_works":["https://openalex.org/W1537917412","https://openalex.org/W1564392956","https://openalex.org/W1840792122","https://openalex.org/W1965359191","https://openalex.org/W1971592854","https://openalex.org/W1975029441","https://openalex.org/W1979700466","https://openalex.org/W1981403169","https://openalex.org/W2025008083","https://openalex.org/W2043858330","https://openalex.org/W2050207246","https://openalex.org/W2051165649","https://openalex.org/W2060273019","https://openalex.org/W2072103832","https://openalex.org/W2075898813","https://openalex.org/W2085030456","https://openalex.org/W2092573310","https://openalex.org/W2102080211","https://openalex.org/W2102163548","https://openalex.org/W2124240321","https://openalex.org/W2124520267","https://openalex.org/W2129986956","https://openalex.org/W2131949644","https://openalex.org/W2133811536","https://openalex.org/W2138719823","https://openalex.org/W2147072925","https://openalex.org/W2147929915","https://openalex.org/W2156782953","https://openalex.org/W2166590762","https://openalex.org/W2177708260","https://openalex.org/W2181498473","https://openalex.org/W2274767195","https://openalex.org/W2321782887","https://openalex.org/W2322032798","https://openalex.org/W2334263927","https://openalex.org/W2344575007","https://openalex.org/W2417095942","https://openalex.org/W2998418934","https://openalex.org/W3106607693","https://openalex.org/W3110433348","https://openalex.org/W4247316152"],"related_works":["https://openalex.org/W2177708260","https://openalex.org/W2959626083","https://openalex.org/W2417095942","https://openalex.org/W2054585088","https://openalex.org/W2625945010","https://openalex.org/W3108474721","https://openalex.org/W4310907701","https://openalex.org/W3196570931","https://openalex.org/W3108794147","https://openalex.org/W2963000796"],"abstract_inverted_index":{"BACKGROUND:":[0],"Transition":[1],"from":[2,186],"pediatric":[3,54,162,199,217],"to":[4,37,46,69],"adult":[5,59,164,169,180,203,209],"care":[6,200],"is":[7],"a":[8,26,65,71,81,104,155,207],"vulnerable":[9,250],"time":[10],"for":[11,41,80,137,193,239,248],"young":[12,240],"adults":[13,241],"with":[14,178,242],"sickle":[15],"cell":[16],"disease":[17],"(SCD);":[18],"however,":[19],"improvements":[20],"in":[21,43,123],"transition":[22,42,237],"are":[23,77],"limited":[24],"by":[25,109,154,226],"lack":[27],"of":[28,33,88,90,106,125,157,167,174,214,229],"quality":[29,39,75,107,121,147,173,223],"indicators.":[30],"The":[31,134],"purpose":[32],"this":[34],"study":[35],"was":[36],"establish":[38],"indicators":[40,76,108,122,148,224],"SCD":[44,243],"and":[45,56,127,143,163,176,201,235,244],"determine":[47],"the":[48,52,57,91,98,101,112,115,138,184,194,215,227],"optimal":[49,195],"timing":[50,166,196],"between":[51,161,197],"final":[53,216],"visit":[55,210],"first":[58,99,168,208],"provider":[60],"visit.":[61,218],"PROCEDURE:":[62],"We":[63],"conducted":[64],"modified":[66],"Delphi":[67],"survey":[68],"reach":[70],"consensus":[72],"on":[73,131,183],"which":[74],"most":[78],"important":[79],"successful":[82],"transition.":[83],"Our":[84],"expert":[85],"panel":[86],"consisted":[87],"members":[89],"Sickle":[92],"Cell":[93],"Adult":[94],"Provider":[95],"Network.":[96],"In":[97,111],"round,":[100,114],"participants":[102,116],"ranked":[103,129],"list":[105],"importance.":[110],"second":[113],"chose":[117],"their":[118,179],"\"top":[119,152],"5\"":[120,153],"terms":[124],"importance":[126],"also":[128,191],"them":[130],"feasibility.":[132],"RESULTS:":[133],"response":[135],"rates":[136],"two":[139],"rounds":[140],"were":[141,149,190],"68":[142],"96%,":[144],"respectively.":[145],"Nine":[146],"chosen":[150,225],"as":[151],"majority":[156,228],"respondents,":[158,230],"including":[159],"communication":[160],"providers,":[165],"visit,":[170],"patient":[171],"self-efficacy,":[172],"life,":[175],"trust":[177],"provider.":[181],"Based":[182],"comments":[185],"round":[187],"1,":[188],"respondents":[189],"asked":[192],"leaving":[198],"entering":[202],"care.":[204],"Most":[205],"recommended":[206],"within":[211],"2":[212],"months":[213],"CONCLUSIONS:":[219],"By":[220],"using":[221],"these":[222,249],"we":[231],"can":[232],"better":[233],"develop":[234],"evaluate":[236],"programs":[238],"improve":[245],"health":[246],"outcomes":[247],"patients.":[251]},"counts_by_year":[{"year":2025,"cited_by_count":3},{"year":2024,"cited_by_count":5},{"year":2023,"cited_by_count":1},{"year":2022,"cited_by_count":5},{"year":2021,"cited_by_count":7},{"year":2020,"cited_by_count":6},{"year":2019,"cited_by_count":7},{"year":2018,"cited_by_count":3},{"year":2017,"cited_by_count":2}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2016-12-08T00:00:00"}