{"id":"https://openalex.org/W4394575799","doi":"https://doi.org/10.1007/s12687-024-00706-x","title":"Comparative assessment of quality of life among adolescents with sickle cell disease and sickle cell trait: evidence from Odisha, India","display_name":"Comparative assessment of quality of life among adolescents with sickle cell disease and sickle cell trait: evidence from Odisha, India","publication_year":2024,"publication_date":"2024-04-08","ids":{"openalex":"https://openalex.org/W4394575799","doi":"https://doi.org/10.1007/s12687-024-00706-x","pmid":"https://pubmed.ncbi.nlm.nih.gov/38587600","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/11217197"},"language":"en","primary_location":{"id":"doi:10.1007/s12687-024-00706-x","doi":"https://doi.org/10.1007/s12687-024-00706-x","is_oa":false,"landing_page_url":"https://doi.org/10.1007/s12687-024-00706-x","pdf_url":null,"source":{"id":"https://openalex.org/S57846568","display_name":"Journal of Community Genetics","issn_l":"1868-310X","issn":["1868-310X","1868-6001"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-d","jufo-1","ki-jl-1","norway-1","poland-70","russia-white-list-3","vabb-shw"],"host_organization":"https://openalex.org/P4310319900","host_organization_name":"Springer Science+Business Media","host_organization_lineage":["https://openalex.org/P4310319900","https://openalex.org/P4310319965"],"host_organization_lineage_names":["Springer Science+Business Media","Springer Nature"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Community Genetics","raw_type":"journal-article"},"volume":null,"type":"article","is_traditional":true,"indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://www.researchsquare.com/article/rs-3990297/latest.pdf","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5023994921","display_name":"Basanta Kumar Bindhani","orcid":"https://orcid.org/0000-0001-5092-121X","observed_orcids":["https://orcid.org/0000-0001-5092-121X"]},"institutions":[{"id":"https://openalex.org/I4210129043","display_name":"Central University of Odisha","ror":"https://ror.org/03kgwb284","country_code":"IN","type":"education","lineage":["https://openalex.org/I4210129043"]}],"countries":["IN"],"is_corresponding":false,"raw_author_name":"Basanta Kumar Bindhani","raw_affiliation_strings":["Department of Anthropology, Central University of Odisha, Koraput, 763004, India"],"raw_orcid":"https://orcid.org/0000-0001-5092-121X","affiliations":[{"raw_affiliation_string":"Department of Anthropology, Central University of Odisha, Koraput, 763004, India","institution_ids":["https://openalex.org/I4210129043"]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5009491673","display_name":"Jayanta Kumar Nayak","orcid":"https://orcid.org/0000-0001-5958-3173","observed_orcids":["https://orcid.org/0000-0001-5958-3173"]},"institutions":[{"id":"https://openalex.org/I4210129043","display_name":"Central University of Odisha","ror":"https://ror.org/03kgwb284","country_code":"IN","type":"education","lineage":["https://openalex.org/I4210129043"]}],"countries":["IN"],"is_corresponding":true,"raw_author_name":"Jayanta Kumar Nayak","raw_affiliation_strings":["Department of Anthropology, Central University of Odisha, Koraput, 763004, India. drnayak@cuo.ac.in","Department of Anthropology, Central University of Odisha, Koraput, 763004, India"],"raw_orcid":"https://orcid.org/0000-0001-5958-3173","affiliations":[{"raw_affiliation_string":"Department of Anthropology, Central University of Odisha, Koraput, 763004, India. drnayak@cuo.ac.in","institution_ids":["https://openalex.org/I4210129043"]},{"raw_affiliation_string":"Department of Anthropology, Central University of Odisha, Koraput, 763004, India","institution_ids":["https://openalex.org/I4210129043"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":["https://openalex.org/A5009491673"],"corresponding_institution_ids":["https://openalex.org/I4210129043"],"apc_list":{"value":3790,"currency":"USD","value_usd":3790},"apc_paid":null,"fwci":2.1793,"has_fulltext":true,"cited_by_count":6,"citation_normalized_percentile":{"value":0.85803411,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":88,"max":98},"biblio":{"volume":"15","issue":"3","first_page":"311","last_page":"318"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":1.0,"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":1.0,"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/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"}},{"id":"https://openalex.org/T10091","display_name":"Malaria Research and Control","score":0.0,"subfield":{"id":"https://openalex.org/subfields/2739","display_name":"Public Health, Environmental and Occupational Health"},"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/sickle-cell-disease","display_name":"sickle cell disease","score":0.9959999918937683},{"id":"https://openalex.org/keywords/sickle-cell-trait","display_name":"sickle cell trait","score":1.0},{"id":"https://openalex.org/keywords/health-related-quality-of-life","display_name":"health-related quality of life","score":0.9100000262260437},{"id":"https://openalex.org/keywords/adolescents","display_name":"adolescents","score":0.9940000176429749},{"id":"https://openalex.org/keywords/psychosocial-impact","display_name":"psychosocial impact","score":0.7839999794960022},{"id":"https://openalex.org/keywords/health-care-expenditure","display_name":"health care expenditure","score":0.8029999732971191},{"id":"https://openalex.org/keywords/blood-transfusion","display_name":"blood transfusion","score":0.8600000143051147},{"id":"https://openalex.org/keywords/hospitalization","display_name":"hospitalization","score":0.9890000224113464},{"id":"https://openalex.org/keywords/hard-to-reach-populations","display_name":"hard-to-reach populations","score":0.7979999780654907},{"id":"https://openalex.org/keywords/odisha","display_name":"Odisha","score":0.7269999980926514}],"concepts":[{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.7745757102966309},{"id":"https://openalex.org/C2777566322","wikidata":"https://www.wikidata.org/wiki/Q3536635","display_name":"Sickle cell trait","level":3,"score":0.7509032487869263},{"id":"https://openalex.org/C150966472","wikidata":"https://www.wikidata.org/wiki/Q3410145","display_name":"Psychosocial","level":2,"score":0.6259971261024475},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.6180785298347473},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.5367397665977478},{"id":"https://openalex.org/C2779978724","wikidata":"https://www.wikidata.org/wiki/Q1436482","display_name":"Worry","level":3,"score":0.4864647090435028},{"id":"https://openalex.org/C138816342","wikidata":"https://www.wikidata.org/wiki/Q189603","display_name":"Public health","level":2,"score":0.4858245849609375},{"id":"https://openalex.org/C558461103","wikidata":"https://www.wikidata.org/wiki/Q154430","display_name":"Anxiety","level":2,"score":0.4491528868675232},{"id":"https://openalex.org/C187212893","wikidata":"https://www.wikidata.org/wiki/Q123028","display_name":"Pediatrics","level":1,"score":0.36065614223480225},{"id":"https://openalex.org/C149923435","wikidata":"https://www.wikidata.org/wiki/Q37732","display_name":"Demography","level":1,"score":0.3523719608783722},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.3238886594772339},{"id":"https://openalex.org/C118552586","wikidata":"https://www.wikidata.org/wiki/Q7867","display_name":"Psychiatry","level":1,"score":0.26888594031333923},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.2447173297405243},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.09976059198379517},{"id":"https://openalex.org/C144024400","wikidata":"https://www.wikidata.org/wiki/Q21201","display_name":"Sociology","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":4,"locations":[{"id":"doi:10.1007/s12687-024-00706-x","doi":"https://doi.org/10.1007/s12687-024-00706-x","is_oa":false,"landing_page_url":"https://doi.org/10.1007/s12687-024-00706-x","pdf_url":null,"source":{"id":"https://openalex.org/S57846568","display_name":"Journal of Community Genetics","issn_l":"1868-310X","issn":["1868-310X","1868-6001"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-d","jufo-1","ki-jl-1","norway-1","poland-70","russia-white-list-3","vabb-shw"],"host_organization":"https://openalex.org/P4310319900","host_organization_name":"Springer Science+Business Media","host_organization_lineage":["https://openalex.org/P4310319900","https://openalex.org/P4310319965"],"host_organization_lineage_names":["Springer Science+Business Media","Springer Nature"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Journal of Community Genetics","raw_type":"journal-article"},{"id":"doi:10.21203/rs.3.rs-3990297/v1","doi":"https://doi.org/10.21203/rs.3.rs-3990297/v1","is_oa":true,"landing_page_url":"http://dx.doi.org/10.21203/rs.3.rs-3990297/v1","pdf_url":"https://www.researchsquare.com/article/rs-3990297/latest.pdf","source":{"id":"https://openalex.org/S4306525896","display_name":"Research Square","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":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Research Square","raw_type":"posted-content"},{"id":"pmh:oai:pubmedcentral.nih.gov:11217197","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/11217197","pdf_url":"https://pmc.ncbi.nlm.nih.gov/articles/PMC11217197/pdf/12687_2024_Article_706.pdf","source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"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":"J Community Genet","raw_type":"Text"},{"id":"pmid:38587600","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/38587600","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":"Journal of community genetics","raw_type":"Journal Article"}],"best_oa_location":{"id":"doi:10.21203/rs.3.rs-3990297/v1","doi":"https://doi.org/10.21203/rs.3.rs-3990297/v1","is_oa":true,"landing_page_url":"http://dx.doi.org/10.21203/rs.3.rs-3990297/v1","pdf_url":"https://www.researchsquare.com/article/rs-3990297/latest.pdf","source":{"id":"https://openalex.org/S4306525896","display_name":"Research Square","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":"cc-by","license_id":"https://openalex.org/licenses/cc-by","version":"submittedVersion","is_accepted":false,"is_published":false,"raw_source_name":"Research Square","raw_type":"posted-content"},"sustainable_development_goals":[{"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3","score":1.0},{"display_name":"Reduced inequalities","id":"https://metadata.un.org/sdg/10","score":0.4000000059604645}],"study_designs":[{"display_name":"Observational Study","id":"https://openalex.org/study-designs/observational-study"}],"awards":[],"funders":[],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W4394575799.pdf","grobid_xml":"https://content.openalex.org/works/W4394575799.grobid-xml"},"referenced_works_count":16,"referenced_works":["https://openalex.org/W1537488288","https://openalex.org/W1998185607","https://openalex.org/W2054301525","https://openalex.org/W2057812793","https://openalex.org/W2065473065","https://openalex.org/W2073872609","https://openalex.org/W2124240321","https://openalex.org/W2145606621","https://openalex.org/W2166846650","https://openalex.org/W2187938748","https://openalex.org/W2252822531","https://openalex.org/W2903096822","https://openalex.org/W2982678495","https://openalex.org/W3036271105","https://openalex.org/W3183316781","https://openalex.org/W4307237363"],"related_works":["https://openalex.org/W2054369769","https://openalex.org/W4213443905","https://openalex.org/W3088379256","https://openalex.org/W1938476165","https://openalex.org/W2527799131","https://openalex.org/W2947842005","https://openalex.org/W4392548026","https://openalex.org/W3017199700","https://openalex.org/W2971870109","https://openalex.org/W2949895136"],"abstract_inverted_index":{"Abstract":[0],"The":[1,71,175,205,227,251,262],"present":[2],"study":[3,124],"aims":[4],"to":[5,77,105,268],"assess":[6,60],"the":[7,61,79,92,107,146,235],"quality":[8,130],"of":[9,12,30,57,81,102,116,131,149,161,178,185,208,234,276],"life":[10,132],"(QOL)":[11],"adolescents":[13,34,82,135,170,224],"with":[14,35,90,136,171,225,240],"sickle":[15,20,36],"cell":[16,21,37],"disease":[17],"(SCD)":[18],"and":[19,65,158,173,215,259,271],"trait":[22],"(SCT)":[23],"in":[24,27,86,134,169,223,238,243,256,274],"hard-to-reach":[25],"regions":[26],"Koraput":[28],"district":[29],"Odisha":[31],"state.":[32],"387":[33],"genes":[38],"(HbSS":[39],"=":[40,43,46,189],"52,":[41],"HbAS":[42],"135,":[44],"HbA":[45],"200)":[47],"were":[48,73,113,203],"selected":[49,114],"through":[50],"their":[51],"medical":[52],"records":[53],"from":[54],"southern":[55],"parts":[56],"Odisha.":[58],"To":[59],"QOL,":[62],"a":[63,126],"validated":[64],"pretested":[66],"QOL":[67,177,198,253],"scale":[68],"was":[69,220,230,254],"modified.":[70],"questionnaires":[72],"modified":[74],"by":[75,192],"aiming":[76],"describe":[78],"proportion":[80],"who":[83],"feel":[84],"restricted":[85],"different":[87],"domains":[88],"along":[89],"measuring":[91],"extent":[93],"within":[94],"each":[95],"domain":[96],"or":[97],"finding":[98],"an":[99],"aggregate":[100],"score":[101,188],"QOL.":[103],"Furthermore,":[104],"explore":[106],"expenditure":[108,229],"on":[109,163],"health,":[110],"552":[111],"households":[112],"randomly,":[115],"which":[117],"72":[118],"families":[119,239,244],"had":[120],"HbS":[121,241,246],"individuals.":[122,279],"This":[123],"found":[125],"significantly":[127,221,231],"lower":[128],"health-related":[129],"(HRQOL)":[133],"SCD.":[137,174,226],"However,":[138],"most":[139],"psychosocial":[140],"sub-domains,":[141],"for":[142],"instance,":[143],"worry":[144],"about":[145],"illness,":[147],"frequency":[148,207],"angry":[150],"days,":[151,165],"feeling":[152],"jealousness":[153],"toward":[154],"other":[155],"normal":[156],"adolescents,":[157],"negative":[159],"feelings":[160],"sadness":[162],"some":[164],"are":[166],"similarly":[167],"affected":[168,183,186,255],"SCT":[172,193,260,272],"overall":[176,252],"SCD":[179,258,270,278],"individuals":[180,194],"is":[181,199],"more":[182],"(percentage":[184],"mean":[187],"60.93%),":[190],"followed":[191],"(35.63%).":[195],"Healthy":[196],"adolescents'":[197],"relatively":[200],"unaffected":[201],"(13%":[202],"affected).":[204],"yearly":[206],"blood":[209],"transfusion":[210],"received":[211],"(1.7":[212],"\u00b1":[213,218],"0.4)":[214],"hospitalization":[216],"(2.1":[217],"0.9)":[219],"higher":[222,232],"healthcare":[228],"(3.6\u201381.3%":[233],"family":[236],"income)":[237],"than":[242],"without":[245],"(0.8\u201319.2%)":[247],"(p":[248],"<":[249],"0.05).":[250],"both":[257,269],"adolescents.":[261],"focus":[263],"should":[264],"be":[265],"given":[266],"equally":[267],"individuals,":[273],"spite":[275],"only":[277]},"counts_by_year":[{"year":2026,"cited_by_count":4},{"year":2025,"cited_by_count":1},{"year":2024,"cited_by_count":1}],"updated_date":"2026-11-10T11:39:43.021295","created_date":"2024-04-09T00:00:00"}