{"id":"https://openalex.org/W2011007354","doi":"https://doi.org/10.1097/00005176-200406001-00247","title":"P0123 PP MEASURING THE HEALTH RELATED QUALITY OF LIFE OF CHILDREN WITH INFLAMMATORY BOWEL DISEASE","display_name":"P0123 PP MEASURING THE HEALTH RELATED QUALITY OF LIFE OF CHILDREN WITH INFLAMMATORY BOWEL DISEASE","publication_year":2004,"publication_date":"2004-06-01","ids":{"openalex":"https://openalex.org/W2011007354","doi":"https://doi.org/10.1097/00005176-200406001-00247","mag":"2011007354"},"language":"en","primary_location":{"id":"doi:10.1097/00005176-200406001-00247","doi":"https://doi.org/10.1097/00005176-200406001-00247","is_oa":false,"landing_page_url":"https://doi.org/10.1097/00005176-200406001-00247","pdf_url":null,"source":{"id":"https://openalex.org/S197964821","display_name":"Journal of Pediatric Gastroenterology and Nutrition","issn_l":"0277-2116","issn":["0277-2116","1536-4801"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","doyens","jufo-1","ki-jl-1","medline","norway-1"],"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":"Journal of Pediatric Gastroenterology and Nutrition","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/A5114259793","display_name":"Mansoor Ahmed","orcid":"https://orcid.org/0009-0008-2689-204X","observed_orcids":["https://orcid.org/0009-0008-2689-204X"]},"institutions":[{"id":"https://openalex.org/I2800861664","display_name":"University Hospital of Wales","ror":"https://ror.org/04fgpet95","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1299209451","https://openalex.org/I2800861664","https://openalex.org/I4210144625"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"M. Ahmed","raw_affiliation_strings":["Paediatric Gastroenterology, University Hospital of Wales","Paediatric Gastroenterology, University Hospital of Wales,"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Paediatric Gastroenterology, University Hospital of Wales","institution_ids":["https://openalex.org/I2800861664"]},{"raw_affiliation_string":"Paediatric Gastroenterology, University Hospital of Wales,","institution_ids":["https://openalex.org/I2800861664"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5025079975","display_name":"Penney Upton","orcid":"https://orcid.org/0000-0002-6453-9510","observed_orcids":["https://orcid.org/0000-0002-6453-9510"]},"institutions":[{"id":"https://openalex.org/I1299209451","display_name":"Cardiff and Vale University Health Board","ror":"https://ror.org/0489f6q08","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1299209451","https://openalex.org/I4210144625"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"P. Upton","raw_affiliation_strings":["Department of Psychology, Cardiff and Vale NHS Trust, Cardiff","Department of Psychology, Cardiff and Vale NHS Trust, Cardiff,"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Department of Psychology, Cardiff and Vale NHS Trust, Cardiff","institution_ids":["https://openalex.org/I1299209451"]},{"raw_affiliation_string":"Department of Psychology, Cardiff and Vale NHS Trust, Cardiff,","institution_ids":["https://openalex.org/I1299209451"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5026516305","display_name":"K. Bryant\u2010Davies","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I2800861664","display_name":"University Hospital of Wales","ror":"https://ror.org/04fgpet95","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1299209451","https://openalex.org/I2800861664","https://openalex.org/I4210144625"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"K. Bryant-Davies","raw_affiliation_strings":["Paediatric Gastroenterology, University Hospital of Wales","Paediatric Gastroenterology, University Hospital of Wales,"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Paediatric Gastroenterology, University Hospital of Wales","institution_ids":["https://openalex.org/I2800861664"]},{"raw_affiliation_string":"Paediatric Gastroenterology, University Hospital of Wales,","institution_ids":["https://openalex.org/I2800861664"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5112830665","display_name":"Michael Cosgrove","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I2800526087","display_name":"Singleton Hospital","ror":"https://ror.org/02ab2dg68","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1294711689","https://openalex.org/I2800526087"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"M. Cosgrove","raw_affiliation_strings":["Paediatric Gastroenterology, Singleton Hospital, Swansea","Paediatric Gastroenterology, Singleton Hospital, Swansea,"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Paediatric Gastroenterology, Singleton Hospital, Swansea","institution_ids":["https://openalex.org/I2800526087"]},{"raw_affiliation_string":"Paediatric Gastroenterology, Singleton Hospital, Swansea,","institution_ids":["https://openalex.org/I2800526087"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5063578835","display_name":"Peter Dale","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I2800476137","display_name":"Royal Gwent Hospital","ror":"https://ror.org/03vt5c527","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I2800476137","https://openalex.org/I2802109268","https://openalex.org/I4210144625"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"P. J. Dale","raw_affiliation_strings":["Paediatric Gastroenterology, Royal Gwent Hospital, Newport, United Kingdom"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Paediatric Gastroenterology, Royal Gwent Hospital, Newport, United Kingdom","institution_ids":["https://openalex.org/I2800476137"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5109725969","display_name":"H. R. Jenkins","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I2800861664","display_name":"University Hospital of Wales","ror":"https://ror.org/04fgpet95","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1299209451","https://openalex.org/I2800861664","https://openalex.org/I4210144625"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"H. R. Jenkins","raw_affiliation_strings":["Paediatric Gastroenterology, University Hospital of Wales","Paediatric Gastroenterology, University Hospital of Wales,"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Paediatric Gastroenterology, University Hospital of Wales","institution_ids":["https://openalex.org/I2800861664"]},{"raw_affiliation_string":"Paediatric Gastroenterology, University Hospital of Wales,","institution_ids":["https://openalex.org/I2800861664"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":4,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":3780,"currency":"USD","value_usd":3780},"apc_paid":null,"fwci":null,"has_fulltext":false,"cited_by_count":0,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":"39","issue":"Supplement 1","first_page":"S104","last_page":"S104"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10134","display_name":"Inflammatory Bowel Disease","score":0.9883000254631042,"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":0.9883000254631042,"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/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":0.003100000089034438,"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"}},{"id":"https://openalex.org/T12823","display_name":"Adolescent and Pediatric Healthcare","score":0.0008999999845400453,"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"}}],"keywords":[{"id":"https://openalex.org/keywords/l","display_name":"L","score":0.37599998712539673},{"id":"https://openalex.org/keywords/health-related-quality-of-life","display_name":"health-related quality of life","score":0.8870000243186951},{"id":"https://openalex.org/keywords/inflammatory-bowel-disease","display_name":"inflammatory bowel disease","score":0.9279999732971191},{"id":"https://openalex.org/keywords/crohn-s-disease","display_name":"Crohn's disease","score":0.8759999871253967},{"id":"https://openalex.org/keywords/ulcerative-colitis","display_name":"ulcerative colitis","score":1.0},{"id":"https://openalex.org/keywords/children","display_name":"children","score":0.7160000205039978},{"id":"https://openalex.org/keywords/psychometric-validation","display_name":"psychometric validation","score":0.859000027179718},{"id":"https://openalex.org/keywords/reliability-statistics","display_name":"reliability statistics","score":0.47999998927116394},{"id":"https://openalex.org/keywords/construct-validity","display_name":"construct validity","score":0.9210000038146973},{"id":"https://openalex.org/keywords/parent-proxy-reporting","display_name":"parent proxy reporting","score":0.46000000834465027},{"id":"https://openalex.org/keywords/disease-activity","display_name":"disease activity","score":0.8840000033378601},{"id":"https://openalex.org/keywords/patient-reported-outcomes","display_name":"patient-reported outcomes","score":0.6119999885559082},{"id":"https://openalex.org/keywords/internal-consistency","display_name":"internal consistency","score":0.48899999260902405},{"id":"https://openalex.org/keywords/discriminant-validity","display_name":"discriminant validity","score":0.7120000123977661}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.9068844318389893},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.6776158809661865},{"id":"https://openalex.org/C2778260677","wikidata":"https://www.wikidata.org/wiki/Q917447","display_name":"Inflammatory bowel disease","level":3,"score":0.6776094436645508},{"id":"https://openalex.org/C2780479503","wikidata":"https://www.wikidata.org/wiki/Q1477","display_name":"Ulcerative colitis","level":3,"score":0.6402108669281006},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.6247336268424988},{"id":"https://openalex.org/C2780148112","wikidata":"https://www.wikidata.org/wiki/Q1432581","display_name":"Proxy (statistics)","level":2,"score":0.5565664768218994},{"id":"https://openalex.org/C2777572184","wikidata":"https://www.wikidata.org/wiki/Q15749161","display_name":"Inflammatory Bowel Diseases","level":4,"score":0.4864058792591095},{"id":"https://openalex.org/C49453240","wikidata":"https://www.wikidata.org/wiki/Q1592163","display_name":"Construct validity","level":3,"score":0.43123024702072144},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.3773277997970581},{"id":"https://openalex.org/C70410870","wikidata":"https://www.wikidata.org/wiki/Q199906","display_name":"Clinical psychology","level":1,"score":0.36300957202911377},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.35440295934677124},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.33806049823760986},{"id":"https://openalex.org/C171606756","wikidata":"https://www.wikidata.org/wiki/Q506132","display_name":"Psychometrics","level":2,"score":0.32041001319885254},{"id":"https://openalex.org/C119857082","wikidata":"https://www.wikidata.org/wiki/Q2539","display_name":"Machine learning","level":1,"score":0.0},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.0},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1097/00005176-200406001-00247","doi":"https://doi.org/10.1097/00005176-200406001-00247","is_oa":false,"landing_page_url":"https://doi.org/10.1097/00005176-200406001-00247","pdf_url":null,"source":{"id":"https://openalex.org/S197964821","display_name":"Journal of Pediatric Gastroenterology and Nutrition","issn_l":"0277-2116","issn":["0277-2116","1536-4801"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["cwts-core","doyens","jufo-1","ki-jl-1","medline","norway-1"],"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":"Journal of Pediatric Gastroenterology and Nutrition","raw_type":"journal-article"}],"best_oa_location":null,"sustainable_development_goals":[{"score":1.0,"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being"}],"sustainable_development_goals_aurora":[{"score":0.6600000262260437,"id":"https://metadata.un.org/sdg/10","display_name":"Reduced inequalities"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W2378399001","https://openalex.org/W4238311784","https://openalex.org/W2072422113","https://openalex.org/W2222574474","https://openalex.org/W3028463028","https://openalex.org/W2408495761","https://openalex.org/W2883700740","https://openalex.org/W2023228095","https://openalex.org/W2811189393","https://openalex.org/W2594933901"],"abstract_inverted_index":{"Introduction:":[0],"Treatment":[1],"and":[2,21,58,83,86,95,127,132,143,147,162,195,207,212,224,235,246,296,301,320,343],"follow":[3],"up":[4],"of":[5,34,39,60,81,88,98,116,139,199,276,292,322,329],"patients":[6,223,348],"with":[7,68,104,181,196,332,349],"Inflammatory":[8,48],"Bowel":[9,49],"Disease":[10,50],"(IBD)":[11],"is":[12,42],"mainly":[13],"based":[14],"on":[15,183,216],"clinical":[16,344],"symptoms,":[17],"laboratory":[18],"tests,":[19],"endoscopic":[20],"histologic":[22],"findings.":[23],"However":[24],"these":[25],"findings":[26],"fail":[27],"to":[28,54,110,137,169],"reflect":[29],"the":[30,56,61,92,99,148,172,192,238,251,256,266,277,290,318,323],"patients\u2019":[31],"subjective":[32],"experience":[33],"health.":[35],"Health":[36],"Related":[37],"Quality":[38],"Life":[40],"(HRQL)":[41],"an":[43,105],"important":[44],"outcome":[45,339],"measure":[46,108,325,340],"in":[47],"(IBD).":[51],"We":[52],"aimed":[53],"test":[55],"validity":[57,321],"reliability":[59,319],"Anglicised":[62,324],"PedsQlTM":[63,100,130,176,230,270,334],"core":[64,101,305],"module":[65],"for":[66,124,160,191,210,265,299,326,341],"children":[67,141,234,331],"IBD.":[69,333,350],"Methods:":[70],"Children":[71],"aged":[72],"8\u201318":[73],"years":[74],"(N=56)":[75],"who":[76],"fulfilled":[77],"national":[78],"IBD":[79,111,222],"definitions":[80],"Crohns":[82],"Ulcerative":[84],"Colitis":[85],"50":[87],"their":[89,144,225],"parents":[90,145,226],"completed":[91],"self":[93,161],"report":[94,164,214],"proxy":[96,163,213],"version":[97],"module,":[102],"along":[103],"established":[106],"HRQL":[107,281],"specific":[109],"(IMPACT":[112],"III).":[113],"An":[114],"assessment":[115],"disease":[117,200],"activity":[118,201],"was":[119],"made":[120],"using":[121],"severity":[122],"ratings":[123],"ulcerative":[125],"colitis":[126],"Crohn\u2019s":[128],"Disease.":[129],"patient":[131],"parent":[133,247],"scores":[134,177,182,231],"were":[135,152,254],"compared":[136],"those":[138,309],"healthy":[140,233],"(N=561)":[142],"(N=272)":[146],"questionnaires":[149],"psychometric":[150],"properties":[151],"tested":[153],"as":[154,274],"described":[155,310],"below.":[156],"Results:":[157],"Alpha":[158],"co-efficients":[159],"scales":[165],"ranged":[166,187,261],"from":[167,188,262],"0.70":[168],"0.94":[170],"confirming":[171],"scales\u2019":[173],"internal":[174],"reliability.":[175],"showed":[178],"significant":[179],"correlation":[180],"IMPACT":[184],"(Pearson\u2019s":[185,259],"R":[186,204,260],"0.32\u20130.76,":[189],"P<0.05":[190,209,264],"different":[193,267],"subscales)":[194],"a":[197,327,337],"rating":[198],"(e.g.":[202],"Pearson\u2019s":[203],"=":[205],"0.38":[206],"0.30,":[208],"self-report":[211],"respectively":[215],"Total":[217],"score)":[218],"establishing":[219,237],"construct":[220,258],"validity.":[221,241],"reported":[227,315],"significantly":[228],"lower":[229],"than":[232],"parents,":[236],"measure\u2019s":[239],"discriminant":[240],"Good":[242],"concordance":[243],"between":[244],"child":[245,300],"forms":[248,298],"confirmed":[249],"that":[250],"two":[252],"reports":[253],"measuring":[255],"same":[257],"0.68\u20130.84,":[263],"subscales).":[268],"Conclusion:":[269],"has":[271],"been":[272],"recommended":[273],"one":[275],"more":[278],"promising":[279],"paediatric":[280,347],"measurement":[282],"systems":[283],"currently":[284],"available.":[285],"Its":[286,303],"advantages":[287],"include":[288],"brevity,":[289],"availability":[291],"age":[293],"appropriate":[294],"versions,":[295],"parallel":[297],"parent.":[302],"generic":[304],"dimensions":[306],"also":[307],"match":[308],"by":[311],"WHO.":[312],"The":[313],"work":[314],"here":[316],"confirms":[317],"group":[328],"UK":[330],"will":[335],"provide":[336],"useful":[338],"research":[342],"practice":[345],"involving":[346]},"counts_by_year":[],"updated_date":"2026-10-03T13:16:28.481748","created_date":"2025-10-10T00:00:00"}