{"id":"https://openalex.org/W78031303","doi":null,"title":"[Quality of life in children with sickle cell disease in Amsterdam area].","display_name":"[Quality of life in children with sickle cell disease in Amsterdam area].","publication_year":1999,"publication_date":"1999-10-09","ids":{"openalex":"https://openalex.org/W78031303","mag":"78031303","pmid":"https://pubmed.ncbi.nlm.nih.gov/10560546"},"language":"nl","primary_location":{"id":"pmid:10560546","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/10560546","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":"Nederlands tijdschrift voor geneeskunde","raw_type":"Comparative Study"},"volume":null,"type":"article","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/A5064164625","display_name":"Arnon Philip Kater","orcid":"https://orcid.org/0000-0003-3190-1891","observed_orcids":["https://orcid.org/0000-0003-3190-1891"]},"institutions":[{"id":"https://openalex.org/I2802928900","display_name":"Amsterdam UMC Location University of Amsterdam","ror":"https://ror.org/03t4gr691","country_code":"NL","type":"healthcare","lineage":["https://openalex.org/I2802928900","https://openalex.org/I4210151833"]}],"countries":["NL"],"is_corresponding":false,"raw_author_name":"A P Kater","raw_affiliation_strings":["Academisch Medisch Centrum (AMC), Amsterdam"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Academisch Medisch Centrum (AMC), Amsterdam","institution_ids":["https://openalex.org/I2802928900"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5112089714","display_name":"Harri\u00ebt Heijboer","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"H Heijboer","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5034014065","display_name":"Marjolein Peters","orcid":"https://orcid.org/0000-0001-8419-7944","observed_orcids":["https://orcid.org/0000-0001-8419-7944"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"M Peters","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5111736039","display_name":"T. Vogels","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"T Vogels","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5111455603","display_name":"Martin H. Prins","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"M H Prins","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"last","author":{"id":"https://openalex.org/A5004635893","display_name":"Hugo S. A. Heymans","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"H S Heymans","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":0.4384,"has_fulltext":false,"cited_by_count":27,"citation_normalized_percentile":{"value":0.57232346,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":88,"max":94},"biblio":{"volume":"143","issue":"41","first_page":"2049","last_page":"53"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":0.9994999766349792,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"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/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":0.9994999766349792,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"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":0.0,"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"}},{"id":"https://openalex.org/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":0.0,"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/sickle-cell-disease","display_name":"sickle cell disease","score":1.0},{"id":"https://openalex.org/keywords/quality-of-life","display_name":"quality of life","score":0.8840000033378601},{"id":"https://openalex.org/keywords/children","display_name":"children","score":0.9279999732971191},{"id":"https://openalex.org/keywords/immigrant-children","display_name":"immigrant children","score":0.8640000224113464},{"id":"https://openalex.org/keywords/physical-functioning","display_name":"physical function","score":0.6790000200271606},{"id":"https://openalex.org/keywords/psychological-well-being","display_name":"psychological well-being","score":0.7429999709129333},{"id":"https://openalex.org/keywords/negative-emotions","display_name":"negative emotions","score":0.7059999704360962},{"id":"https://openalex.org/keywords/cognitive-function","display_name":"cognitive function","score":0.6340000033378601},{"id":"https://openalex.org/keywords/social-functioning","display_name":"social functioning","score":0.7360000014305115}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.8462382555007935},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.6903964281082153},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.6114075779914856},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.5592415928840637},{"id":"https://openalex.org/C169900460","wikidata":"https://www.wikidata.org/wiki/Q2200417","display_name":"Cognition","level":2,"score":0.4916585087776184},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.27725356817245483},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.08154669404029846},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.0}],"mesh":[{"descriptor_ui":"D000293","descriptor_name":"Adolescent","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D000349","descriptor_name":"Africa","qualifier_ui":"Q000208","qualifier_name":"ethnology","is_major_topic":false},{"descriptor_ui":"D000755","descriptor_name":"Anemia, Sickle Cell","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D002648","descriptor_name":"Child","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D005260","descriptor_name":"Female","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D006450","descriptor_name":"Hemoglobin SC Disease","qualifier_ui":"Q000523","qualifier_name":"psychology","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":"D009426","descriptor_name":"Netherlands","qualifier_ui":"Q000453","qualifier_name":"epidemiology","is_major_topic":false},{"descriptor_ui":"D010290","descriptor_name":"Parents","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":false},{"descriptor_ui":"D011788","descriptor_name":"Quality of Life","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D011795","descriptor_name":"Surveys and Questionnaires","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D013532","descriptor_name":"Suriname","qualifier_ui":"Q000208","qualifier_name":"ethnology","is_major_topic":false},{"descriptor_ui":"D016022","descriptor_name":"Case-Control Studies","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D017086","descriptor_name":"beta-Thalassemia","qualifier_ui":"Q000523","qualifier_name":"psychology","is_major_topic":true},{"descriptor_ui":"D017691","descriptor_name":"Caribbean Region","qualifier_ui":"Q000208","qualifier_name":"ethnology","is_major_topic":false}],"locations_count":5,"locations":[{"id":"pmid:10560546","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/10560546","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":"Nederlands tijdschrift voor geneeskunde","raw_type":"Comparative Study"},{"id":"pmh:oai:oai-pmh.tno.nl:13522","doi":null,"is_oa":false,"landing_page_url":"https://resolver.tno.nl/uuid:5d1535d3-2118-4d81-bd5f-660ea4b89572","pdf_url":null,"source":{"id":"https://openalex.org/S7407055233","display_name":"TNO Repository","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":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Nederlands Tijdschrift voor Geneeskunde, 143(41), pp. 2049-2053.","raw_type":"info:eu-repo/semantics/article"},{"id":"pmh:oai:tudelft.nl:uuid:5d1535d3-2118-4d81-bd5f-660ea4b89572","doi":null,"is_oa":false,"landing_page_url":"http://resolver.tudelft.nl/uuid:5d1535d3-2118-4d81-bd5f-660ea4b89572","pdf_url":null,"source":{"id":"https://openalex.org/S4306402238","display_name":"Repository hosted by TU Delft Library (TU Delft)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I98358874","host_organization_name":"Delft University of Technology","host_organization_lineage":["https://openalex.org/I98358874"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Nederlands Tijdschrift voor Geneeskunde, 41, 143, 2049-2053","raw_type":"article"},{"id":"pmh:tno:oai:tudelft.nl:uuid:5d1535d3-2118-4d81-bd5f-660ea4b89572","doi":null,"is_oa":false,"landing_page_url":"http://resolver.tudelft.nl/uuid:5d1535d3-2118-4d81-bd5f-660ea4b89572","pdf_url":null,"source":{"id":"https://openalex.org/S4306401843","display_name":"Data Archiving and Networked Services (DANS)","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1322597698","host_organization_name":"Royal Netherlands Academy of Arts and Sciences","host_organization_lineage":["https://openalex.org/I1322597698"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"","raw_type":"info:eu-repo/semantics/article"},{"id":"mag:78031303","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/10560546","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":[{"display_name":"Good health and well-being","score":1.0,"id":"https://metadata.un.org/sdg/3"}],"study_designs":[{"display_name":"Observational Study","id":"https://openalex.org/study-designs/observational-study"}],"awards":[],"funders":[],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W7010886255","https://openalex.org/W7020260311","https://openalex.org/W3206296154","https://openalex.org/W2527799131","https://openalex.org/W2065473065","https://openalex.org/W3088379256","https://openalex.org/W3209828019","https://openalex.org/W2040352603","https://openalex.org/W2166427615","https://openalex.org/W2123284025"],"abstract_inverted_index":{"OBJECTIVE:":[0],"To":[1],"determine":[2],"the":[3,42,49,69,87,128,146,166,200,217],"differences":[4],"in":[5,41,47,205],"quality":[6,24,218],"of":[7,25,27,62,120,158,179,202,216,219],"life":[8,26],"between":[9,33,72,90],"children":[10,28,82],"with":[11,29,115,133],"sickle":[12,30,134,185],"cell":[13,31,135,186],"disease":[14,32,136,187],"and":[15,35,74,78,92,151,155,170,192],"healthy":[16,117],"immigrant":[17,121],"children.":[18,122],"DESIGN:":[19],"Descriptive,":[20],"comparative.":[21],"METHOD:":[22],"The":[23,96,102,111],"5":[34,73],"15":[36,93],"years":[37,76,94],"old":[38,77],"being":[39],"treated":[40],"Emma":[43],"Children's":[44,60],"Hospital":[45],"AMC":[46],"Amsterdam,":[48],"Netherlands,":[50],"was":[51,71,89,99,125,163],"assessed":[52],"by":[53,106],"using":[54,127],"a":[55,79,116],"questionnaire":[56,80],"for":[57,81,165,174],"parents":[58,141],"(TNO-AZL":[59],"Quality":[61],"Life":[63],"Questionnaire":[64],"(TACQOL)":[65],"parent":[66],"form)":[67,85],"if":[68,86],"child":[70,84,88],"11":[75],"(TACQOL":[83],"8":[91],"old.":[95],"study":[97],"period":[98],"April-October":[100],"1998.":[101],"questionnaires":[103],"were":[104,113],"completed":[105],"45":[107],"(parents":[108],"of)":[109],"patients.":[110],"results":[112],"compared":[114],"reference":[118],"group":[119],"Statistical":[123],"analysis":[124],"performed":[126],"Student":[129],"t-Test.":[130],"RESULTS:":[131],"Children":[132],"as":[137,139,197,199],"well":[138,198],"their":[140],"scored":[142],"significantly":[143],"lower":[144],"on":[145,156],"items":[147,167],"general":[148],"physical,":[149],"motor":[150],"independent":[152],"daily":[153,206],"functioning":[154,169,176],"occurrence":[157,178],"negative":[159],"emotions.":[160,181],"No":[161],"significance":[162],"observed":[164],"cognitive":[168,212],"school":[171],"performance":[172],"nor":[173],"social":[175,214],"or":[177,213],"positive":[180],"CONCLUSION:":[182],"In":[183],"children,":[184],"leads":[188],"to":[189,210],"compromised":[190,211],"physical":[191],"possibly":[193],"also":[194],"psychological":[195],"wellbeing,":[196],"experience":[201],"decreased":[203],"independence":[204],"functioning,":[207],"but":[208],"not":[209],"aspects":[215],"life.":[220]},"counts_by_year":[{"year":2025,"cited_by_count":1},{"year":2022,"cited_by_count":1},{"year":2021,"cited_by_count":1},{"year":2019,"cited_by_count":1},{"year":2017,"cited_by_count":1}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2016-06-24T00:00:00"}