{"id":"https://openalex.org/W4404100320","doi":"https://doi.org/10.1183/13993003.congress-2024.pa2471","title":"An international survey to inform the development of a disease-specific health-related quality of life tool for cardiac sarcoidosis","display_name":"An international survey to inform the development of a disease-specific health-related quality of life tool for cardiac sarcoidosis","publication_year":2024,"publication_date":"2024-09-14","ids":{"openalex":"https://openalex.org/W4404100320","doi":"https://doi.org/10.1183/13993003.congress-2024.pa2471"},"language":"en","primary_location":{"id":"doi:10.1183/13993003.congress-2024.pa2471","doi":"https://doi.org/10.1183/13993003.congress-2024.pa2471","is_oa":false,"landing_page_url":"https://doi.org/10.1183/13993003.congress-2024.pa2471","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"ILD/DPLD of known origin","raw_type":"proceedings-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/A5072927143","display_name":"Juan Carlos Quijano-Campos","orcid":"https://orcid.org/0000-0001-9892-5084","observed_orcids":["https://orcid.org/0000-0001-9892-5084"]},"institutions":[{"id":"https://openalex.org/I1307195382","display_name":"St Bartholomew's Hospital","ror":"https://ror.org/00nh9x179","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1307195382","https://openalex.org/I225661044"]},{"id":"https://openalex.org/I166337079","display_name":"Queen Mary University of London","ror":"https://ror.org/026zzn846","country_code":"GB","type":"education","lineage":["https://openalex.org/I124357947","https://openalex.org/I166337079"]},{"id":"https://openalex.org/I225661044","display_name":"Barts Health NHS Trust","ror":"https://ror.org/00b31g692","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I225661044"]},{"id":"https://openalex.org/I4210149920","display_name":"William Harvey Research Institute","ror":"https://ror.org/0574dzy90","country_code":"GB","type":"facility","lineage":["https://openalex.org/I124357947","https://openalex.org/I166337079","https://openalex.org/I4210149920"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Juan Carlos Quijano-Campos","raw_affiliation_strings":["1William Harvey Research Institute, Queen Mary University of London; St Bartholomew\u2019s Hospital, Barts Health NHS Trust; Research & Development, Royal Papworth Hospital NHS Foundation Trust, London, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"1William Harvey Research Institute, Queen Mary University of London; St Bartholomew\u2019s Hospital, Barts Health NHS Trust; Research & Development, Royal Papworth Hospital NHS Foundation Trust, London, United Kingdom","institution_ids":["https://openalex.org/I1307195382","https://openalex.org/I166337079","https://openalex.org/I225661044","https://openalex.org/I4210149920"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5014568121","display_name":"Neha Sekhri","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I1307195382","display_name":"St Bartholomew's Hospital","ror":"https://ror.org/00nh9x179","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1307195382","https://openalex.org/I225661044"]},{"id":"https://openalex.org/I166337079","display_name":"Queen Mary University of London","ror":"https://ror.org/026zzn846","country_code":"GB","type":"education","lineage":["https://openalex.org/I124357947","https://openalex.org/I166337079"]},{"id":"https://openalex.org/I225661044","display_name":"Barts Health NHS Trust","ror":"https://ror.org/00b31g692","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I225661044"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Neha Sekhri","raw_affiliation_strings":["2Barts Heart Centre, St Bartholomew\u2019s Hospital, Barts Health NHS Trust; Queen Mary University of London, London, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"2Barts Heart Centre, St Bartholomew\u2019s Hospital, Barts Health NHS Trust; Queen Mary University of London, London, United Kingdom","institution_ids":["https://openalex.org/I1307195382","https://openalex.org/I166337079","https://openalex.org/I225661044"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5012455872","display_name":"Muhunthan Thillai","orcid":"https://orcid.org/0000-0003-0430-2017","observed_orcids":["https://orcid.org/0000-0003-0430-2017"]},"institutions":[{"id":"https://openalex.org/I4210104974","display_name":"Papworth Hospital NHS Foundation Trust","ror":"https://ror.org/01qbebb31","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I4210104974"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Muhunthan Thillai","raw_affiliation_strings":["3Interstitial Lung Disease Unit, Royal Papworth Hospital NHS Foundation Trust; University of East Anglia, Cambridge, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"3Interstitial Lung Disease Unit, Royal Papworth Hospital NHS Foundation Trust; University of East Anglia, Cambridge, United Kingdom","institution_ids":["https://openalex.org/I4210104974"]}]},{"author_position":"middle","author":{"id":null,"display_name":"Herbert Clarke","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Herbert Clarke","raw_affiliation_strings":["4CARD-SARC Public and Patient Involvement group, London, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"4CARD-SARC Public and Patient Involvement group, London, United Kingdom","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5070236460","display_name":"Joanna Whight","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Joanna Whight","raw_affiliation_strings":["4CARD-SARC Public and Patient Involvement group, London, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"4CARD-SARC Public and Patient Involvement group, London, United Kingdom","institution_ids":[]}]},{"author_position":"middle","author":{"id":null,"display_name":"Elizabeth Blower","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Elizabeth Blower","raw_affiliation_strings":["4CARD-SARC Public and Patient Involvement group, London, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"4CARD-SARC Public and Patient Involvement group, London, United Kingdom","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5104649917","display_name":"Lawrence Othen-Price","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Lawrence Othen-Price","raw_affiliation_strings":["4CARD-SARC Public and Patient Involvement group, London, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"4CARD-SARC Public and Patient Involvement group, London, United Kingdom","institution_ids":[]}]},{"author_position":"middle","author":{"id":null,"display_name":"Elizabeth Murphy","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Elizabeth Murphy","raw_affiliation_strings":["4CARD-SARC Public and Patient Involvement group, London, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"4CARD-SARC Public and Patient Involvement group, London, United Kingdom","institution_ids":[]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5063850885","display_name":"Julie Sanders","orcid":"https://orcid.org/0000-0002-7335-2803","observed_orcids":["https://orcid.org/0000-0002-7335-2803","https://orcid.org/0000-0003-0276-2984"]},"institutions":[{"id":"https://openalex.org/I1307195382","display_name":"St Bartholomew's Hospital","ror":"https://ror.org/00nh9x179","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1307195382","https://openalex.org/I225661044"]},{"id":"https://openalex.org/I166337079","display_name":"Queen Mary University of London","ror":"https://ror.org/026zzn846","country_code":"GB","type":"education","lineage":["https://openalex.org/I124357947","https://openalex.org/I166337079"]},{"id":"https://openalex.org/I225661044","display_name":"Barts Health NHS Trust","ror":"https://ror.org/00b31g692","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I225661044"]},{"id":"https://openalex.org/I4210149920","display_name":"William Harvey Research Institute","ror":"https://ror.org/0574dzy90","country_code":"GB","type":"facility","lineage":["https://openalex.org/I124357947","https://openalex.org/I166337079","https://openalex.org/I4210149920"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"Julie Sanders","raw_affiliation_strings":["5St Bartholomew\u2019s Hospital, Barts Health NHS Trust; William Harvey Research Institute, Queen Mary University of London, London, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"5St Bartholomew\u2019s Hospital, Barts Health NHS Trust; William Harvey Research Institute, Queen Mary University of London, London, United Kingdom","institution_ids":["https://openalex.org/I1307195382","https://openalex.org/I166337079","https://openalex.org/I225661044","https://openalex.org/I4210149920"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":5,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":"PA2471","last_page":"PA2471"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T11571","display_name":"Sarcoidosis and Beryllium Toxicity Research","score":0.8661999702453613,"subfield":{"id":"https://openalex.org/subfields/2737","display_name":"Physiology"},"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/T11571","display_name":"Sarcoidosis and Beryllium Toxicity Research","score":0.8661999702453613,"subfield":{"id":"https://openalex.org/subfields/2737","display_name":"Physiology"},"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/T13117","display_name":"Health Education and Validation","score":0.11309999972581863,"subfield":{"id":"https://openalex.org/subfields/3304","display_name":"Education"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":0.004699999932199717,"subfield":{"id":"https://openalex.org/subfields/2002","display_name":"Economics and Econometrics"},"field":{"id":"https://openalex.org/fields/20","display_name":"Economics, Econometrics and Finance"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/cardiac-sarcoidosis","display_name":"cardiac sarcoidosis","score":1.0},{"id":"https://openalex.org/keywords/health-related-quality-of-life","display_name":"health-related quality of life","score":0.9810000061988831},{"id":"https://openalex.org/keywords/patient-reported-outcome-measures","display_name":"patient-reported outcome measures","score":0.921999990940094},{"id":"https://openalex.org/keywords/item-generation","display_name":"item generation","score":0.9070000052452087},{"id":"https://openalex.org/keywords/item-reduction","display_name":"item reduction","score":0.8370000123977661},{"id":"https://openalex.org/keywords/clinimetrics","display_name":"clinimetrics","score":0.6769999861717224},{"id":"https://openalex.org/keywords/patient-and-public-involvement","display_name":"patient and public involvement","score":0.972000002861023},{"id":"https://openalex.org/keywords/questionnaire-development","display_name":"questionnaire development","score":0.7630000114440918}],"concepts":[{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.542214035987854},{"id":"https://openalex.org/C2911014034","wikidata":"https://www.wikidata.org/wiki/Q193894","display_name":"Cardiac sarcoidosis","level":3,"score":0.512755274772644},{"id":"https://openalex.org/C2779530757","wikidata":"https://www.wikidata.org/wiki/Q1207505","display_name":"Quality (philosophy)","level":2,"score":0.49157795310020447},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.48668915033340454},{"id":"https://openalex.org/C2781301800","wikidata":"https://www.wikidata.org/wiki/Q193894","display_name":"Sarcoidosis","level":2,"score":0.47649306058883667},{"id":"https://openalex.org/C3019006561","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Health related quality of life","level":3,"score":0.45364853739738464},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.43099284172058105},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.42419347167015076},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.19078922271728516},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.0998285710811615},{"id":"https://openalex.org/C138885662","wikidata":"https://www.wikidata.org/wiki/Q5891","display_name":"Philosophy","level":0,"score":0.0},{"id":"https://openalex.org/C111472728","wikidata":"https://www.wikidata.org/wiki/Q9471","display_name":"Epistemology","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1183/13993003.congress-2024.pa2471","doi":"https://doi.org/10.1183/13993003.congress-2024.pa2471","is_oa":false,"landing_page_url":"https://doi.org/10.1183/13993003.congress-2024.pa2471","pdf_url":null,"source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"ILD/DPLD of known origin","raw_type":"proceedings-article"}],"best_oa_location":null,"sustainable_development_goals":[{"score":1.0,"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3"}],"sustainable_development_goals_aurora":[{"score":0.4399999976158142,"display_name":"Zero hunger","id":"https://metadata.un.org/sdg/2"}],"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/W2990887036","https://openalex.org/W1906033448","https://openalex.org/W2433437944","https://openalex.org/W2415972633","https://openalex.org/W2758783874","https://openalex.org/W3203523287","https://openalex.org/W2048342008","https://openalex.org/W34358884","https://openalex.org/W2049779936","https://openalex.org/W4289933407"],"abstract_inverted_index":{"Introduction:":[0],"The":[1,17,60,89,116,181],"process":[2],"to":[3,21,71,85,108,191,203],"develop":[4],"a":[5,44,73,93],"comprehensive":[6],"patient-reported":[7],"outcome":[8],"measure":[9],"(PROM)":[10],"should":[11],"integrate":[12,204],"several":[13,36],"sources":[14,187],"and":[15,41,51,62,111,130,141,185,199,206,222],"techniques.":[16],"CARD-SARC,":[18],"disease-specific":[19],"PROM":[20],"assess":[22],"the":[23,68,136,147,151,160,177],"impact":[24],"of":[25,32,135,176,183],"cardiac":[26],"sarcoidosis":[27],"(CS)":[28],"on":[29,146],"health-related":[30],"quality":[31],"life":[33],"(HRQoL),":[34],"incorporated":[35],"techniques":[37],"for":[38,81,159,174,196,213,220],"item-generation:":[39],"theory":[40],"research":[42],"findings,":[43],"systematic":[45],"review,":[46],"clinical":[47],"observations,":[48],"qualitative":[49,184],"interviews":[50],"experts\u2019":[52],"opinion.":[53],"Methods:":[54],"A":[55,103],"clinimetric":[56],"approach":[57],"was":[58,79,106,118],"conducted.":[59],"patient":[61],"public":[63],"involvement":[64],"(PPI)":[65],"group":[66],"guided":[67],"simultaneous":[69],"triangulation":[70],"generate":[72],"preliminary":[74],"item-list.":[75],"An":[76],"online":[77],"survey":[78,117],"designed":[80],"international":[82],"multidisciplinary":[83,207],"CS-experts":[84],"support":[86],"item":[87,210],"reduction.":[88],"scoring":[90],"options":[91],"included":[92,144,173],"7-point":[94],"Likert":[95],"scale":[96],"(\u22123":[97],"\u2018definitely":[98],"no';":[99],"+3":[100],"'definitely":[101],"yes').":[102],"consensus":[104,152],"meeting":[105],"planned":[107],"discuss":[109],"results":[110],"resolve":[112],"potential":[113,137],"discrepancies.":[114],"Results:":[115],"completed":[119],"by":[120],"26":[121],"CS-experts,":[122],"including":[123],"11":[124],"pulmonologist,":[125],"7":[126],"cardiologists,":[127],"5":[128],"PPI-advisers":[129],"3":[131],"specialist":[132],"nurses.":[133],"None":[134],"items":[138,156,165,171],"were":[139,143,157,166,172],"excluded,":[140],"19":[142],"based":[145],"original":[148],"score.":[149],"After":[150],"meeting,":[153],"42":[154],"additional":[155],"recommended":[158],"new":[161],"tool.":[162],"Additionally,":[163],"2":[164],"amended.":[167],"In":[168],"total,":[169],"61":[170],"pilot-testing":[175],"CARD-SARC":[178],"questionnaire.":[179],"Conclusions:":[180],"combination":[182],"quantitative":[186],"during":[188,209],"item-generation":[189],"contributed":[190],"capture":[192],"relevant":[193,218],"HRQoL":[194],"concepts":[195],"CS":[197],"patients":[198,221],"clinicians.":[200],"We":[201],"advocate":[202],"PPI":[205],"clinicians":[208,223],"reduction":[211],"strategies":[212],"PROMs,":[214],"ensuring":[215],"that":[216],"all":[217],"topics":[219],"are":[224],"included.":[225]},"counts_by_year":[],"updated_date":"2026-10-16T09:59:22.235173","created_date":"2025-10-10T00:00:00"}
