{"id":"https://openalex.org/W7225304244","doi":"https://doi.org/10.21203/rs.3.rs-11115888/v1","title":"Neurodevelopmental condition count, functional difficulties, and care-coordination gaps among U.S. children with caregiver-reported congenital heart conditions: a cross-sectional NSCH study, 2020-2024","display_name":"Neurodevelopmental condition count, functional difficulties, and care-coordination gaps among U.S. children with caregiver-reported congenital heart conditions: a cross-sectional NSCH study, 2020-2024","publication_year":2026,"publication_date":"2026-11-06","ids":{"openalex":"https://openalex.org/W7225304244","doi":"https://doi.org/10.21203/rs.3.rs-11115888/v1"},"language":"en","primary_location":{"id":"doi:10.21203/rs.3.rs-11115888/v1","doi":"https://doi.org/10.21203/rs.3.rs-11115888/v1","is_oa":true,"landing_page_url":"https://doi.org/10.21203/rs.3.rs-11115888/v1","pdf_url":"https://www.researchsquare.com/article/rs-11115888/latest.pdf","source":{"id":"https://openalex.org/S4306525896","display_name":"Research Square","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Research Square","raw_type":"posted-content"},"volume":null,"type":"preprint","is_traditional":true,"indexed_in":["crossref"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://www.researchsquare.com/article/rs-11115888/latest.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5160891967","display_name":"Wei Dong","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210138078","display_name":"Second Affiliated Hospital of Nanjing Medical University","ror":"https://ror.org/04pge2a40","country_code":"CN","type":"healthcare","lineage":["https://openalex.org/I4210138078"]}],"countries":["CN"],"is_corresponding":false,"raw_author_name":"Wei Dong","raw_affiliation_strings":["Children's Hospital of Nanjing Medical University"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Children's Hospital of Nanjing Medical University","institution_ids":["https://openalex.org/I4210138078"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5101012702","display_name":"Mo Xuming","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210138078","display_name":"Second Affiliated Hospital of Nanjing Medical University","ror":"https://ror.org/04pge2a40","country_code":"CN","type":"healthcare","lineage":["https://openalex.org/I4210138078"]}],"countries":["CN"],"is_corresponding":false,"raw_author_name":"Mo Xuming","raw_affiliation_strings":["Children's Hospital of Nanjing Medical University"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Children's Hospital of Nanjing Medical University","institution_ids":["https://openalex.org/I4210138078"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":[],"corresponding_institution_ids":["https://openalex.org/I4210138078"],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":true,"cited_by_count":0,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10300","display_name":"Congenital Heart Disease Studies","score":0.9580000042915344,"subfield":{"id":"https://openalex.org/subfields/2705","display_name":"Cardiology and Cardiovascular Medicine"},"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/T10300","display_name":"Congenital Heart Disease Studies","score":0.9580000042915344,"subfield":{"id":"https://openalex.org/subfields/2705","display_name":"Cardiology and Cardiovascular Medicine"},"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/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.01759999990463257,"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/T11677","display_name":"Congenital heart defects research","score":0.004000000189989805,"subfield":{"id":"https://openalex.org/subfields/1312","display_name":"Molecular Biology"},"field":{"id":"https://openalex.org/fields/13","display_name":"Biochemistry, Genetics and Molecular Biology"},"domain":{"id":"https://openalex.org/domains/1","display_name":"Life Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/congenital-heart-disease","display_name":"congenital heart disease","score":0.9829999804496765},{"id":"https://openalex.org/keywords/children","display_name":"children","score":0.6309999823570251},{"id":"https://openalex.org/keywords/care-coordination","display_name":"care coordination","score":0.7260000109672546},{"id":"https://openalex.org/keywords/neurodevelopmental-disorders","display_name":"neurodevelopmental disorders","score":0.9120000004768372},{"id":"https://openalex.org/keywords/functional-difficulties","display_name":"functional difficulties","score":0.9779999852180481},{"id":"https://openalex.org/keywords/national-survey-of-children-s-health","display_name":"National Survey of Children's Health","score":0.8080000281333923},{"id":"https://openalex.org/keywords/multidisciplinary-care","display_name":"multidisciplinary care","score":0.597000002861023}],"concepts":[{"id":"https://openalex.org/C2780074459","wikidata":"https://www.wikidata.org/wiki/Q389735","display_name":"Heart disease","level":2,"score":0.7613999843597412},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.7357000112533569},{"id":"https://openalex.org/C2778198053","wikidata":"https://www.wikidata.org/wiki/Q181754","display_name":"Heart failure","level":2,"score":0.6212999820709229},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.4740999937057495},{"id":"https://openalex.org/C44249647","wikidata":"https://www.wikidata.org/wiki/Q208498","display_name":"Confidence interval","level":2,"score":0.4528999924659729},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.42170000076293945},{"id":"https://openalex.org/C2993918154","wikidata":"https://www.wikidata.org/wiki/Q12131","display_name":"Functional impairment","level":2,"score":0.3750999867916107},{"id":"https://openalex.org/C2984752397","wikidata":"https://www.wikidata.org/wiki/Q3259956","display_name":"Primary care","level":2,"score":0.3571999967098236},{"id":"https://openalex.org/C534262118","wikidata":"https://www.wikidata.org/wiki/Q177719","display_name":"Medical diagnosis","level":2,"score":0.3476000130176544},{"id":"https://openalex.org/C73269764","wikidata":"https://www.wikidata.org/wiki/Q954529","display_name":"Poisson regression","level":3,"score":0.30559998750686646},{"id":"https://openalex.org/C2780600951","wikidata":"https://www.wikidata.org/wiki/Q383126","display_name":"Chronic condition","level":3,"score":0.29840001463890076},{"id":"https://openalex.org/C160735492","wikidata":"https://www.wikidata.org/wiki/Q31207","display_name":"Health care","level":2,"score":0.25760000944137573},{"id":"https://openalex.org/C2779473830","wikidata":"https://www.wikidata.org/wiki/Q1540899","display_name":"MEDLINE","level":2,"score":0.2563999891281128}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.21203/rs.3.rs-11115888/v1","doi":"https://doi.org/10.21203/rs.3.rs-11115888/v1","is_oa":true,"landing_page_url":"https://doi.org/10.21203/rs.3.rs-11115888/v1","pdf_url":"https://www.researchsquare.com/article/rs-11115888/latest.pdf","source":{"id":"https://openalex.org/S4306525896","display_name":"Research Square","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Research Square","raw_type":"posted-content"}],"best_oa_location":{"id":"doi:10.21203/rs.3.rs-11115888/v1","doi":"https://doi.org/10.21203/rs.3.rs-11115888/v1","is_oa":true,"landing_page_url":"https://doi.org/10.21203/rs.3.rs-11115888/v1","pdf_url":"https://www.researchsquare.com/article/rs-11115888/latest.pdf","source":{"id":"https://openalex.org/S4306525896","display_name":"Research Square","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":null,"host_organization_name":null,"host_organization_lineage":[],"host_organization_lineage_names":[],"type":"repository"},"license":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Research Square","raw_type":"posted-content"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":1.0}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[],"funders":[{"id":"https://openalex.org/F4320321001","display_name":"National Natural Science Foundation of China","ror":"https://ror.org/01h0zpd94"}],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W7225304244.pdf","grobid_xml":"https://content.openalex.org/works/W7225304244.grobid-xml"},"referenced_works_count":13,"referenced_works":["https://openalex.org/W2034030864","https://openalex.org/W2097387720","https://openalex.org/W2104652216","https://openalex.org/W2111342278","https://openalex.org/W2112669742","https://openalex.org/W2151335800","https://openalex.org/W2766725582","https://openalex.org/W2895037352","https://openalex.org/W3103655088","https://openalex.org/W4309126435","https://openalex.org/W4323977915","https://openalex.org/W4383599280","https://openalex.org/W4392051539"],"related_works":["https://openalex.org/W3097244693","https://openalex.org/W7163015255","https://openalex.org/W4416786790","https://openalex.org/W7162106442","https://openalex.org/W2567760226","https://openalex.org/W2940048082","https://openalex.org/W4413188021","https://openalex.org/W4403227537","https://openalex.org/W4383599280","https://openalex.org/W4414205168"],"abstract_inverted_index":{"Abstract":[0],"Background":[1],"Children":[2],"with":[3,36,42,179,197,224],"congenital":[4,44,68,139],"heart":[5,45,69,78,140,227],"disease":[6],"often":[7],"receive":[8,91],"care":[9,99,145,241],"across":[10],"cardiology,":[11],"primary":[12,86],"care,":[13],"developmental,":[14,255],"rehabilitation,":[15,256],"and":[16,28,119,147,174,257],"educational":[17,258],"services.":[18],"We":[19,48],"examined":[20],"whether":[21],"the":[22,29,138,184,190],"number":[23,30],"of":[24,31,54,62,76,97,155,244],"current":[25,226],"neurodevelopmental":[26,116,187],"diagnoses":[27],"functional":[32,121,175,193],"difficulties":[33,176,194,231],"were":[34,177],"associated":[35,178,196],"care-coordination":[37,156],"gaps":[38,238],"among":[39,101],"U.S.":[40],"children":[41,63,102,136,223,233],"caregiver-reported":[43],"conditions.":[46],"Methods":[47],"analyzed":[49],"pooled":[50],"2020\u20132024":[51],"National":[52],"Survey":[53],"Children's":[55],"Health":[56],"data":[57],"in":[58,158,239],"a":[59,77,149,225],"cross-sectional":[60],"study":[61],"aged":[64],"6\u201317":[65],"years.":[66],"A":[67],"condition":[70,79,117,141,172],"was":[71,81,88,161,218],"defined":[72],"by":[73],"caregiver":[74],"report":[75],"that":[80],"present":[82,219],"at":[83,92],"birth.":[84],"The":[85,152,215],"outcome":[87],"failure":[89,157,181,198],"to":[90,222],"least":[93],"one":[94],"needed":[95,104,144,240],"element":[96],"effective":[98],"coordination":[100,146],"who":[103],"coordination.":[105,242],"Survey-weighted":[106],"modified":[107],"Poisson":[108],"models":[109],"estimated":[110],"adjusted":[111],"prevalence":[112,154],"ratios":[113],"(aPRs)":[114],"for":[115],"count":[118,173],"age-applicable":[120],"difficulty":[122],"count,":[123],"each":[124],"categorized":[125],"as":[126],"0,":[127],"1,":[128],"or":[129,131,207],"2":[130,206],"more.":[132],"Results":[133],"Among":[134],"3,830":[135],"meeting":[137],"definition,":[142],"2,788":[143],"had":[148],"classifiable":[150],"outcome.":[151],"weighted":[153],"this":[159],"domain":[160],"40.8%":[162],"(95%":[163],"confidence":[164],"interval":[165],"[CI],":[166],"37.1%-44.6%).":[167],"In":[168,183],"separate":[169],"models,":[170],"both":[171],"higher":[180],"prevalence.":[182],"joint":[185],"model,":[186],"estimates":[188],"included":[189],"null,":[191],"whereas":[192],"remained":[195],"(one":[199],"difficulty:":[200],"aPR,":[201,210],"1.77;":[202],"95%":[203,212],"CI,":[204,213],"1.37\u20132.28;":[205],"more":[208,237],"difficulties:":[209],"2.31;":[211],"1.78\u20133.01).":[214],"same":[216],"pattern":[217],"after":[220],"restriction":[221],"condition.":[228],"Conclusions":[229],"Functional":[230],"identified":[232],"whose":[234],"caregivers":[235],"reported":[236],"Assessment":[243],"everyday":[245],"function":[246],"may":[247],"add":[248],"useful":[249],"information":[250],"when":[251],"services":[252],"span":[253],"medical,":[254],"settings.":[259]},"counts_by_year":[],"updated_date":"2026-11-09T13:22:03.289127","created_date":"2026-11-06T00:00:00"}
