{"id":"https://openalex.org/W4405168525","doi":"https://doi.org/10.14309/01.ajg.0001082556.60430.7f","title":"S6 Empowering Patients to Participate in Clinical Visits: A Patient-Guided Checklist for Young Adults Living With Inflammatory Bowel Disease","display_name":"S6 Empowering Patients to Participate in Clinical Visits: A Patient-Guided Checklist for Young Adults Living With Inflammatory Bowel Disease","publication_year":2024,"publication_date":"2024-12-01","ids":{"openalex":"https://openalex.org/W4405168525","doi":"https://doi.org/10.14309/01.ajg.0001082556.60430.7f"},"language":"en","primary_location":{"id":"doi:10.14309/01.ajg.0001082556.60430.7f","doi":"https://doi.org/10.14309/01.ajg.0001082556.60430.7f","is_oa":false,"landing_page_url":"https://doi.org/10.14309/01.ajg.0001082556.60430.7f","pdf_url":null,"source":{"id":"https://openalex.org/S66441642","display_name":"The American Journal of Gastroenterology","issn_l":"0002-9270","issn":["0002-9270","1572-0241"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-2","ki-jl-2","medline","norway-2","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310315671","host_organization_name":"Lippincott Williams & Wilkins","host_organization_lineage":["https://openalex.org/P4310315671","https://openalex.org/P4310318547"],"host_organization_lineage_names":["Lippincott Williams & Wilkins","Wolters Kluwer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"American Journal of Gastroenterology","raw_type":"journal-article"},"volume":null,"type":"conference-abstract","indexed_in":["crossref"],"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/A5007049657","display_name":"Zahraa Chorghay","orcid":"https://orcid.org/0000-0001-6398-229X","observed_orcids":["https://orcid.org/0000-0001-6398-229X"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Zahraa Chorghay","raw_affiliation_strings":["Crohn\u2019s and Colitis Young Adults Network, Cary, North Carolina, United States;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Crohn\u2019s and Colitis Young Adults Network, Cary, North Carolina, United States;","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5022028438","display_name":"Peter J. Park","orcid":"https://orcid.org/0000-0001-9378-960X","observed_orcids":["https://orcid.org/0000-0001-9378-960X"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Peter Park","raw_affiliation_strings":["Crohn\u2019s and Colitis Young Adults Network, Cary, North Carolina, United States;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Crohn\u2019s and Colitis Young Adults Network, Cary, North Carolina, United States;","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5057210679","display_name":"Sneha Dave","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Sneha Dave","raw_affiliation_strings":["Crohn\u2019s and Colitis Young Adults Network, Cary, North Carolina, United States;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Crohn\u2019s and Colitis Young Adults Network, Cary, North Carolina, United States;","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5062867816","display_name":"Rosa Kelekian","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Rosa Kelekian","raw_affiliation_strings":["Crohn\u2019s and Colitis Young Adults Network, Cary, North Carolina, United States;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Crohn\u2019s and Colitis Young Adults Network, Cary, North Carolina, United States;","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5022041820","display_name":"Adam S. Faye","orcid":"https://orcid.org/0000-0002-1571-5856","observed_orcids":["https://orcid.org/0000-0002-1571-5856"]},"institutions":[{"id":"https://openalex.org/I4210086933","display_name":"NYU Langone Health","ror":"https://ror.org/005dvqh91","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I4210086933"]},{"id":"https://openalex.org/I57206974","display_name":"New York University","ror":"https://ror.org/0190ak572","country_code":"US","type":"education","lineage":["https://openalex.org/I57206974"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Adam Faye","raw_affiliation_strings":["NYU Grossman School of Medicine, NYU Langone Health, New York, New York, United States;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"NYU Grossman School of Medicine, NYU Langone Health, New York, New York, United States;","institution_ids":["https://openalex.org/I4210086933","https://openalex.org/I57206974"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5026000712","display_name":"Sandra Seo Young Kim","orcid":"https://orcid.org/0000-0002-7028-2563","observed_orcids":["https://orcid.org/0000-0002-7028-2563"]},"institutions":[{"id":"https://openalex.org/I1316902750","display_name":"Cleveland Clinic","ror":"https://ror.org/03xjacd83","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1316902750"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Sandra Kim","raw_affiliation_strings":["Pediatric Gastroenterology, Hepatology & Nutrition, Cleveland Clinic, Cleveland, Ohio, United States"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Pediatric Gastroenterology, Hepatology & Nutrition, Cleveland Clinic, Cleveland, Ohio, United States","institution_ids":["https://openalex.org/I1316902750"]}]},{"author_position":"last","author":{"id":null,"display_name":"Giana Formica","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Giana Formica","raw_affiliation_strings":["Crohn\u2019s and Colitis Young Adults Network, Cary, North Carolina, United States;"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Crohn\u2019s and Colitis Young Adults Network, Cary, North Carolina, United States;","institution_ids":[]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":3,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":4390,"currency":"USD","value_usd":4390},"apc_paid":null,"fwci":null,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":"119","issue":"12S","first_page":"S2","last_page":"S2"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10134","display_name":"Inflammatory Bowel Disease","score":0.9653000235557556,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"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"}},"topics":[{"id":"https://openalex.org/T10134","display_name":"Inflammatory Bowel Disease","score":0.9653000235557556,"subfield":{"id":"https://openalex.org/subfields/1311","display_name":"Genetics"},"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"}},{"id":"https://openalex.org/T10827","display_name":"Patient-Provider Communication in Healthcare","score":0.005499999970197678,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"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/T11639","display_name":"Mental Health and Patient Involvement","score":0.004399999976158142,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/inflammatory-bowel-disease","display_name":"inflammatory bowel disease","score":0.9890000224113464},{"id":"https://openalex.org/keywords/young-adults","display_name":"young adults","score":0.8870000243186951},{"id":"https://openalex.org/keywords/patient-provider-communication","display_name":"patient-provider communication","score":0.8199999928474426},{"id":"https://openalex.org/keywords/extraintestinal-manifestations","display_name":"extraintestinal manifestations","score":0.8790000081062317},{"id":"https://openalex.org/keywords/perianal-disease","display_name":"perianal disease","score":0.8050000071525574},{"id":"https://openalex.org/keywords/treatment-adherence","display_name":"medication adherence","score":0.8050000071525574},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"quality of life","score":0.8330000042915344},{"id":"https://openalex.org/keywords/patient-empowerment","display_name":"patient empowerment","score":0.5210000276565552},{"id":"https://openalex.org/keywords/crohn-s-disease","display_name":"Crohn's disease","score":0.8420000076293945},{"id":"https://openalex.org/keywords/ulcerative-colitis","display_name":"ulcerative colitis","score":0.9800000190734863},{"id":"https://openalex.org/keywords/patient-reported-outcomes","display_name":"patient-reported outcomes","score":0.4749999940395355},{"id":"https://openalex.org/keywords/lived-experience","display_name":"lived experience","score":0.42100000381469727},{"id":"https://openalex.org/keywords/care-planning","display_name":"care planning","score":0.4099999964237213},{"id":"https://openalex.org/keywords/adverse-drug-reactions","display_name":"adverse drug reactions","score":0.4259999990463257},{"id":"https://openalex.org/keywords/sleep-hygiene","display_name":"sleep hygiene","score":0.35899999737739563}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.9770435094833374},{"id":"https://openalex.org/C2779356329","wikidata":"https://www.wikidata.org/wiki/Q922625","display_name":"Checklist","level":2,"score":0.8326650857925415},{"id":"https://openalex.org/C2778260677","wikidata":"https://www.wikidata.org/wiki/Q917447","display_name":"Inflammatory bowel disease","level":3,"score":0.7592490911483765},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.5462682843208313},{"id":"https://openalex.org/C205545832","wikidata":"https://www.wikidata.org/wiki/Q17156455","display_name":"Young adult","level":2,"score":0.4623357951641083},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.37401068210601807},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.32377147674560547},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.2798886299133301},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.23635441064834595},{"id":"https://openalex.org/C180747234","wikidata":"https://www.wikidata.org/wiki/Q23373","display_name":"Cognitive psychology","level":1,"score":0.0},{"id":"https://openalex.org/C15744967","wikidata":"https://www.wikidata.org/wiki/Q9418","display_name":"Psychology","level":0,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.14309/01.ajg.0001082556.60430.7f","doi":"https://doi.org/10.14309/01.ajg.0001082556.60430.7f","is_oa":false,"landing_page_url":"https://doi.org/10.14309/01.ajg.0001082556.60430.7f","pdf_url":null,"source":{"id":"https://openalex.org/S66441642","display_name":"The American Journal of Gastroenterology","issn_l":"0002-9270","issn":["0002-9270","1572-0241"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-b","doyens","jufo-2","ki-jl-2","medline","norway-2","poland-200","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310315671","host_organization_name":"Lippincott Williams & Wilkins","host_organization_lineage":["https://openalex.org/P4310315671","https://openalex.org/P4310318547"],"host_organization_lineage_names":["Lippincott Williams & Wilkins","Wolters Kluwer"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"American Journal of Gastroenterology","raw_type":"journal-article"}],"best_oa_location":null,"sustainable_development_goals":[{"score":0.98580002784729,"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W2978475097","https://openalex.org/W2320040125","https://openalex.org/W2789654625","https://openalex.org/W1480946728","https://openalex.org/W4405168638","https://openalex.org/W7131241200","https://openalex.org/W2053122677","https://openalex.org/W2133992544","https://openalex.org/W1973721259","https://openalex.org/W4386132956"],"abstract_inverted_index":{"Background:":[0],"One":[1],"of":[2,6,33,43,104,137,148,184,229,278,308,416,452,470,487],"the":[3,19,145,169,182,227,441,466,485],"biggest":[4],"challenges":[5],"diagnosing":[7],"and":[8,29,80,171,199,201,215,243,269,295,302,327,330,344,351,357,362,376,384,391,420,428,445,455,468,476,479],"managing":[9],"inflammatory":[10],"bowel":[11],"diseases":[12],"(IBD)":[13],"is":[14,36,64,84,139],"its":[15],"heterogeneous":[16],"presentation.":[17],"Given":[18],"variability":[20],"in":[21,91,168,252,315,406],"gastrointestinal":[22],"symptoms,":[23],"extra-intestinal":[24],"manifestations":[25],"(EIM),":[26],"systemic":[27],"issues,":[28,101,329],"factors":[30,365,422],"impacting":[31],"quality":[32,307],"life,":[34],"it":[35,57],"difficult":[37],"to":[38,60,66,75,93,180,218,225,237,274,337,353,381,396,402,448,464],"capture":[39],"a":[40,77,110,435],"holistic":[41,78],"understanding":[42],"an":[44,149],"individual\u2019s":[45],"disease":[46,332],"that":[47,83,113,220,230,267,483],"accurately":[48],"informs":[49],"care":[50,151,489],"recommendations.":[51],"Young":[52,173],"adult":[53,106,166],"patients":[54,127,167,268,475],"can":[55,125,271,423],"find":[56],"especially":[58],"challenging":[59],"identify":[61,134],"which":[62],"information":[63,82,138],"pertinent":[65,140],"their":[67,142],"healthcare":[68],"provider":[69],"(HCP).":[70],"Available":[71],"IBD":[72,107,150,192,253,407,446,453,477],"tools":[73,193],"tend":[74],"lack":[76],"framework":[79],"collect":[81],"either":[85],"too":[86,89],"broad":[87],"or":[88,404],"narrow":[90],"scope":[92],"guide":[94],"effective":[95,430],"patient-provider":[96],"conversation.":[97],"To":[98,154],"address":[99],"these":[100],"our":[102,156,177,234,244],"team":[103],"young":[105,118,165,313],"patients/researchers":[108],"developed":[109],"comprehensive":[111,257,414,436],"checklist":[112,124,207,235,245,258,415,438,472],"includes":[114,259],"real-world":[115],"considerations":[116],"affecting":[117],"adults":[119,314],"with":[120,161,264,285],"IBD.":[121],"Our":[122,256],"proposed":[123],"empower":[126],"during":[128],"clinical":[129,426,450,488],"visits":[130],"by":[131,248,440,473,491],"helping":[132],"them":[133],"what":[135],"kind":[136],"for":[141,205,312],"HCP,":[143],"enabling":[144],"collaborative":[146],"development":[147],"plan.":[152],"Methods:":[153],"develop":[155],"patient-guided":[157],"checklist,":[158,186],"we":[159,187,209],"began":[160],"informal":[162],"discussions":[163,451],"between":[164],"Crohn\u2019s":[170],"Colitis":[172],"Adult":[174],"Network.":[175],"Using":[176],"lived":[178],"experiences":[179],"create":[181],"basis":[183],"this":[185,471,492],"combined":[188],"elements":[189],"from":[190,240],"existing":[191,238],"identified":[194],"through":[195],"previous":[196],"experiences,":[197,444],"word-of-mouth,":[198],"web":[200],"app":[202],"searches.":[203],"Finally,":[204],"each":[206,263],"item,":[208],"performed":[210],"literature":[211],"searches":[212],"on":[213],"PubMed":[214],"Google":[216],"Scholar":[217],"ensure":[219],"there":[221],"was":[222,246],"sufficient":[223],"evidence":[224],"support":[226,410],"inclusion":[228],"item.":[231],"We":[232,433],"cross-referenced":[233],"items":[236],"resources":[239],"accredited":[241],"organizations,":[242],"reviewed":[247],"2":[249],"HCPs":[250,270],"specializing":[251],"care.":[254],"Results:":[255],"7":[260],"main":[261],"categories,":[262],"several":[265],"sub-items,":[266],"regularly":[272],"track":[273],"enable":[275,429],"long-term":[276],"management":[277,304,454],"IBD:":[279,286],"(1)":[280],"Gastrointestinal":[281],"symptoms":[282,419],"classically":[283],"associated":[284],"abdominal":[287],"pain/cramping,":[288],"bloating,":[289],"nausea,":[290],"rectal":[291],"bleeding,":[292],"stool":[293],"characteristics,":[294],"ostomy":[296,303],"status.":[297],"Of":[298],"note,":[299],"fecal":[300],"urgency":[301],"are":[305],"important":[306,463],"life":[309],"concerns":[310],"particularly":[311],"structured":[316],"settings":[317],"(school,":[318],"work,":[319],"etc.).":[320],"(2)":[321],"EIMs":[322],"such":[323,339,366,399],"as":[324,340,367,400],"eye,":[325],"skin,":[326],"joint":[328],"perianal":[331],"(3)":[333],"Systemic":[334],"issues":[335],"secondary":[336],"IBD,":[338],"anemia,":[341],"liver":[342],"inflammation,":[343],"bone":[345],"density":[346],"loss":[347],"(4)":[348],"Medication":[349],"scheduling":[350],"tracking":[352],"understand":[354],"medication":[355],"adherence":[356],"side":[358],"effects":[359],"(5)":[360],"Lifestyle":[361],"health":[363,387],"maintenance":[364],"self-care,":[368],"psycho-social":[369],"supports,":[370],"sexual/reproductive":[371],"health,":[372],"nutrition,":[373],"sleep":[374],"hygiene,":[375],"routine":[377],"examinations":[378],"(6)":[379],"Access":[380],"institutional":[382],"systems":[383],"supports":[385],"including":[386],"advocates,":[388],"accessibility":[389],"services,":[390],"financial":[392],"counseling":[393],"(7)":[394],"Connection":[395],"social":[397],"systems,":[398],"connection":[401],"friends,":[403],"participation":[405],"groups":[408,482],"/peer":[409],"programs.":[411],"Conclusions:":[412],"A":[413],"clinically":[417],"significant":[418],"lifestyle":[421],"encourage":[424],"shared":[425,457],"decision-making":[427],"patient-centered":[431],"communication.":[432],"present":[434],"patient-created":[437],"informed":[439],"literature,":[442],"patient":[443],"specialists,":[447],"augment":[449],"promote":[456],"decision-making.":[458],"Further":[459],"research":[460],"will":[461],"be":[462],"assess":[465],"efficacy":[467],"uptake":[469],"surveying":[474],"HCPs,":[478],"conducting":[480],"focus":[481],"examine":[484],"effectiveness":[486],"guided":[490],"checklist.":[493]},"counts_by_year":[],"updated_date":"2026-09-22T06:50:58.402377","created_date":"2024-12-09T00:00:00"}