{"id":"https://openalex.org/W2412010474","doi":null,"title":"Assessing the quality of life in children with cystic fibrosis.","display_name":"Assessing the quality of life in children with cystic fibrosis.","publication_year":2001,"publication_date":"2001-01-01","ids":{"openalex":"https://openalex.org/W2412010474","mag":"2412010474","pmid":"https://pubmed.ncbi.nlm.nih.gov/11579801"},"language":"en","primary_location":{"id":"pmid:11579801","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/11579801","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":"WMJ : official publication of the State Medical Society of Wisconsin","raw_type":"Journal Article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["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/A5053581439","display_name":"Raymond J. Kotwicki","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I135310074","display_name":"University of Wisconsin\u2013Madison","ror":"https://ror.org/01y2jtd41","country_code":"US","type":"education","lineage":["https://openalex.org/I135310074"]},{"id":"https://openalex.org/I2799905417","display_name":"UW Health University Hospital","ror":"https://ror.org/02mqqhj42","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I135310074","https://openalex.org/I2799905417","https://openalex.org/I4210132596"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"R J Kotwicki","raw_affiliation_strings":["University of Wisconsin Medical School, School of Pharmacy, University of Wisconsin Hospital and Clinics, Madison, WI, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Wisconsin Medical School, School of Pharmacy, University of Wisconsin Hospital and Clinics, Madison, WI, USA","institution_ids":["https://openalex.org/I135310074","https://openalex.org/I2799905417"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5016523626","display_name":"L J Condra","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I135310074","display_name":"University of Wisconsin\u2013Madison","ror":"https://ror.org/01y2jtd41","country_code":"US","type":"education","lineage":["https://openalex.org/I135310074"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"L Condra","raw_affiliation_strings":["University of Wisconsin-Madison, #TAB#"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Wisconsin-Madison, #TAB#","institution_ids":["https://openalex.org/I135310074"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5072084706","display_name":"Lee C. Vermeulen","orcid":"https://orcid.org/0000-0002-0482-4117","observed_orcids":["https://orcid.org/0000-0002-0482-4117"]},"institutions":[{"id":"https://openalex.org/I135310074","display_name":"University of Wisconsin\u2013Madison","ror":"https://ror.org/01y2jtd41","country_code":"US","type":"education","lineage":["https://openalex.org/I135310074"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"L Vermeulen","raw_affiliation_strings":["University of Wisconsin-Madison, #TAB#"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Wisconsin-Madison, #TAB#","institution_ids":["https://openalex.org/I135310074"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5090316349","display_name":"Terrill Wolf","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I135310074","display_name":"University of Wisconsin\u2013Madison","ror":"https://ror.org/01y2jtd41","country_code":"US","type":"education","lineage":["https://openalex.org/I135310074"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"T Wolf","raw_affiliation_strings":["University of Wisconsin-Madison, #TAB#"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Wisconsin-Madison, #TAB#","institution_ids":["https://openalex.org/I135310074"]}]},{"author_position":"middle","author":{"id":null,"display_name":"J Douglas","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I135310074","display_name":"University of Wisconsin\u2013Madison","ror":"https://ror.org/01y2jtd41","country_code":"US","type":"education","lineage":["https://openalex.org/I135310074"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"J Douglas","raw_affiliation_strings":["University of Wisconsin-Madison, #TAB#"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Wisconsin-Madison, #TAB#","institution_ids":["https://openalex.org/I135310074"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5072965164","display_name":"Philip M. Farrell","orcid":"https://orcid.org/0000-0003-0036-7016","observed_orcids":["https://orcid.org/0000-0003-0036-7016"]},"institutions":[{"id":"https://openalex.org/I135310074","display_name":"University of Wisconsin\u2013Madison","ror":"https://ror.org/01y2jtd41","country_code":"US","type":"education","lineage":["https://openalex.org/I135310074"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"P M Farrell","raw_affiliation_strings":["University of Wisconsin-Madison, #TAB#"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Wisconsin-Madison, #TAB#","institution_ids":["https://openalex.org/I135310074"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":2,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":0.0,"has_fulltext":false,"cited_by_count":15,"citation_normalized_percentile":{"value":0.0,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":88,"max":93},"biblio":{"volume":"100","issue":"5","first_page":"50","last_page":"4"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10665","display_name":"Cystic Fibrosis Research Advances","score":0.9980000257492065,"subfield":{"id":"https://openalex.org/subfields/2740","display_name":"Pulmonary and Respiratory 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/T10665","display_name":"Cystic Fibrosis Research Advances","score":0.9980000257492065,"subfield":{"id":"https://openalex.org/subfields/2740","display_name":"Pulmonary and Respiratory 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/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":0.0005000000237487257,"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/T10549","display_name":"Neonatal Respiratory Health Research","score":9.999999747378752e-05,"subfield":{"id":"https://openalex.org/subfields/2740","display_name":"Pulmonary and Respiratory 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/cystic-fibrosis","display_name":"cystic fibrosis","score":0.9990000128746033},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"quality of life","score":0.9330000281333923},{"id":"https://openalex.org/keywords/children","display_name":"children","score":0.9100000262260437},{"id":"https://openalex.org/keywords/quality-of-well-being-scale","display_name":"Quality of Well-Being Scale","score":0.9670000076293945},{"id":"https://openalex.org/keywords/respiratory-tract-infections","display_name":"respiratory infections","score":0.7409999966621399},{"id":"https://openalex.org/keywords/comorbidity","display_name":"comorbidities","score":0.7879999876022339},{"id":"https://openalex.org/keywords/pill-burden","display_name":"medication burden","score":0.8270000219345093},{"id":"https://openalex.org/keywords/longitudinal-follow-up","display_name":"longitudinal follow-up","score":0.5630000233650208}],"concepts":[{"id":"https://openalex.org/C2776938444","wikidata":"https://www.wikidata.org/wiki/Q178194","display_name":"Cystic fibrosis","level":2,"score":0.8484724760055542},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.8110008835792542},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.7166880369186401},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.45031028985977173},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.343833863735199},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.21782800555229187},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.0}],"mesh":[{"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":"D003550","descriptor_name":"Cystic Fibrosis","qualifier_ui":"Q000503","qualifier_name":"physiopathology","is_major_topic":false},{"descriptor_ui":"D003550","descriptor_name":"Cystic Fibrosis","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"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":"D008297","descriptor_name":"Male","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D011788","descriptor_name":"Quality of Life","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D011795","descriptor_name":"Surveys and Questionnaires","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false}],"locations_count":2,"locations":[{"id":"pmid:11579801","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/11579801","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":"WMJ : official publication of the State Medical Society of Wisconsin","raw_type":"Journal Article"},{"id":"mag:2412010474","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/11579801","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":null,"is_accepted":false,"is_published":false,"raw_source_name":"PubMed","raw_type":null}],"best_oa_location":null,"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":1.0,"display_name":"Good health and well-being"}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[],"funders":[],"has_content":{"pdf":false,"grobid_xml":false},"content_urls":null,"referenced_works_count":12,"referenced_works":["https://openalex.org/W1991298536","https://openalex.org/W2014521676","https://openalex.org/W2030338159","https://openalex.org/W2039598058","https://openalex.org/W2057327428","https://openalex.org/W2062775123","https://openalex.org/W2078194530","https://openalex.org/W2085667581","https://openalex.org/W2109903800","https://openalex.org/W2169121217","https://openalex.org/W2464433743","https://openalex.org/W4390428309"],"related_works":["https://openalex.org/W1575513172","https://openalex.org/W7061554131","https://openalex.org/W4232959233","https://openalex.org/W4248370615","https://openalex.org/W2090404114","https://openalex.org/W2550775245","https://openalex.org/W1993051606","https://openalex.org/W2342473452","https://openalex.org/W2005806130","https://openalex.org/W1571205167"],"abstract_inverted_index":{"Although":[0],"patients":[1],"with":[2,31,66,161,203],"cystic":[3],"fibrosis":[4],"(CF)":[5],"are":[6,38,97],"experiencing":[7],"increased":[8],"longevity,":[9],"it":[10,90],"is":[11,26,45,189],"unclear":[12],"that":[13,93,128],"improved":[14],"quality":[15],"of":[16,23,29,36,52,137,144,153,182],"life":[17],"(QoL)":[18],"accompanies":[19],"the":[20,34,71,75,81,103,110,119,135,142,151,162,170,180],"greater":[21],"quantity":[22],"life.":[24],"This":[25],"especially":[27],"true":[28],"children":[30,44,65,114,202],"CF":[32,78,121],"where":[33],"burdens":[35],"treatment":[37,184],"substantial.":[39],"Assessing":[40],"QoL":[41,63,85,132,194],"in":[42,64,80,113,118,200],"such":[43],"difficult,":[46],"and":[47,149,165,176,196],"only":[48,94],"one":[49],"instrument--the":[50],"Quality":[51],"Well-Being":[53],"(QWB)":[54],"scale--seems":[55],"to":[56,61,179,186],"have":[57,100],"been":[58,101],"used":[59],"extensively":[60],"assess":[62],"CF.":[67,204],"After":[68],"thoroughly":[69],"reviewing":[70],"literature,":[72],"we":[73,107,158],"surveyed":[74],"113":[76],"certified":[77],"centers":[79,96],"United":[82],"States":[83],"about":[84],"assessment.":[86],"With":[87],"84%":[88],"responding,":[89],"was":[91],"found":[92],"7":[95],"assessing":[98],"QoL--4":[99],"using":[102],"QWB":[104,111,129,171],"instrument.":[105],"Concurrently,":[106],"pilot":[108],"tested":[109],"instrument":[112,172],"being":[115],"followed":[116],"longitudinally":[117],"Wisconsin":[120],"Neonatal":[122],"Screening":[123],"Project.":[124],"Our":[125],"results":[126],"indicated":[127],"scores":[130],"reflecting":[131],"decreased":[133],"as":[134,141,150],"number":[136,143,152],"respiratory":[138],"infections":[139],"increased,":[140,148],"concurrent":[145],"medical":[146],"conditions":[147],"different":[154],"medications":[155],"increased.":[156],"However,":[157],"recognized":[159],"problems":[160],"assessed":[163],"domains":[164],"data":[166],"interpretation.":[167],"In":[168],"fact,":[169],"has":[173],"limited":[174],"sensitivity":[175],"responds":[177],"more":[178,193],"extent":[181],"physician-determined":[183],"than":[185],"QoL.":[187],"There":[188],"a":[190],"need":[191],"for":[192],"assessment":[195],"better":[197],"instruments,":[198],"particularly":[199],"young":[201]},"counts_by_year":[{"year":2023,"cited_by_count":1},{"year":2012,"cited_by_count":1}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2016-06-24T00:00:00"}
