Data from clinical health registries, such as medical quality registries, are often used as basis for healthcarequality indicators (QI). To aid the interpretation of quality indicators and support decisions, it is importantto quantify the uncertainty around the QI summary statistics. In this paper we suggest a novel method forquantifying such uncertainty: the Coverage uncertainty range. The method is based on the size of thepopulation present in the register relative to the total relevant population and does not make any assumptionsabout the sampling strategy or the value of the summary statistic. Furthermore, using both simulated dataand real-life data from a Norwegian medical quality registry, we illustrate why using confidence intervalswhen presenting healthcare quality indicators may lead to erroneous conclusions.
{"title":"Coverage uncertainty range: A new method for calculating uncertainty around summary statistics in healthcare quality indicators","authors":"Kari Krizak Halle, Tormod Aarlott Digre, Ragna Elise Støre, Torunn Varmdal","doi":"10.5324/nje.v31i1-2.5617","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5617","url":null,"abstract":"Data from clinical health registries, such as medical quality registries, are often used as basis for healthcarequality indicators (QI). To aid the interpretation of quality indicators and support decisions, it is importantto quantify the uncertainty around the QI summary statistics. In this paper we suggest a novel method forquantifying such uncertainty: the Coverage uncertainty range. The method is based on the size of thepopulation present in the register relative to the total relevant population and does not make any assumptionsabout the sampling strategy or the value of the summary statistic. Furthermore, using both simulated dataand real-life data from a Norwegian medical quality registry, we illustrate why using confidence intervalswhen presenting healthcare quality indicators may lead to erroneous conclusions.","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135618513","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-20DOI: 10.5324/nje.v31i1-2.5616
Inge Joa, Tore Tjora, Kent Jensen
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{"title":"Kvalitetsregistre innen fagområdene psykisk helsevern og rusbehandling","authors":"Inge Joa, Tore Tjora, Kent Jensen","doi":"10.5324/nje.v31i1-2.5616","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5616","url":null,"abstract":"-","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135618511","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
ABSTRACTThe Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP) has systematically collecteddata on individuals with cerebral palsy (CP) and been a driver of knowledge dissemination for over 20 years.NorCP data have increased the competence of health professionals in both the municipal and specialisthealthcare services through publication of multiple scientific articles ranging from risk factors for CP tolifelong interventions, quality improvement projects, and training services. This has led to a streamlinedprocess in the diagnosis and follow-up of children and youths with CP in Norway to ensure that they receive"the right treatment at the right time," regardless of where they live using evidence-based interventions basedon needs that are revealed in the registrations.NORSK SAMMENDRAGNorsk kvalitets- og oppfølgingsregister for cerebral parese (NorCP) har systematisk samlet inn data ompersoner med cerebral parese og vært en pådriver for kunnskapsformidling i over 20 år. NorCP data har øktkompetansen til helsepersonell i både kommune- og spesialisthelsetjenesten gjennom publisering av flerevitenskapelige artikler om risikofaktorer for CP til livslange intervensjoner, kvalitetsforbedringsprosjektersamt kurs og kompetansetjenester. Dette har ført til økt kvalitet på diagnostisering og oppfølging av barn ogunge med CP i Norge, som sikrer at de får «riktig behandling til rett tid», uansett hvor de bor i landet medbruk av evidensbaserte intervensjoner basert på behov som avdekkes ved registreringene.
挪威脑瘫质量和监测登记处(NorCP)系统地收集了脑瘫(CP)患者的数据，并在20多年来一直是知识传播的推动者。通过发表多篇科学文章，从CP的风险因素到终身干预措施、质量改进项目和培训服务，NorCP数据提高了市政和专业医疗保健服务卫生专业人员的能力。这使得挪威对患有CP的儿童和青少年的诊断和随访过程得以简化，以确保他们在“正确的时间接受正确的治疗”，无论他们住在哪里，都可以使用基于登记中显示的需求的循证干预措施。NORSK SAMMENDRAGNorsk kvalitets- og oppfølgingsregister for cerebral parese (NorCP)， systematisk samlet - inn data ompersoner med cerebral parese og vært - en parepa driver for kunnskapssering > 20。NorCP数据有kkkkpetansen和helhelperson，他们的专业人员是the sekkpetansen，他们的专业人员是the sekkpetansen，他们的专业人员是the sekkpetansen，他们的专业人员是the sekkpetansen，他们的专业人员是the kkkpetansen，他们的专业人员是risk - ikofaktoner，他们的专业人员是kkkpetansen，他们的专业人员是kkkpetansen，他们的专业人员是kkkpetansen。在挪威，有两种不同的方法:一种是对患者的诊断，一种是对患者的诊断，另一种是对患者的诊断，另一种是对患者的诊断，另一种是对患者的诊断，另一种是对患者的诊断，另一种是对患者的诊断。
{"title":"The impact of longitudinal surveillance of individuals with CP in Norway; a 20-year quality registry and follow-up program perspective","authors":"Sandra Julsen Hollung, Reidun Jahnsen, Gunvor Lilleholt Klevberg, Nina Kløve, Guro L. Andersen","doi":"10.5324/nje.v31i1-2.5606","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5606","url":null,"abstract":"ABSTRACTThe Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP) has systematically collecteddata on individuals with cerebral palsy (CP) and been a driver of knowledge dissemination for over 20 years.NorCP data have increased the competence of health professionals in both the municipal and specialisthealthcare services through publication of multiple scientific articles ranging from risk factors for CP tolifelong interventions, quality improvement projects, and training services. This has led to a streamlinedprocess in the diagnosis and follow-up of children and youths with CP in Norway to ensure that they receive\"the right treatment at the right time,\" regardless of where they live using evidence-based interventions basedon needs that are revealed in the registrations.NORSK SAMMENDRAGNorsk kvalitets- og oppfølgingsregister for cerebral parese (NorCP) har systematisk samlet inn data ompersoner med cerebral parese og vært en pådriver for kunnskapsformidling i over 20 år. NorCP data har øktkompetansen til helsepersonell i både kommune- og spesialisthelsetjenesten gjennom publisering av flerevitenskapelige artikler om risikofaktorer for CP til livslange intervensjoner, kvalitetsforbedringsprosjektersamt kurs og kompetansetjenester. Dette har ført til økt kvalitet på diagnostisering og oppfølging av barn ogunge med CP i Norge, som sikrer at de får «riktig behandling til rett tid», uansett hvor de bor i landet medbruk av evidensbaserte intervensjoner basert på behov som avdekkes ved registreringene.","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135617961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Nasjonalt register for gastrokirurgi (NORGAST): noen tanker etter ti år","authors":"Stig Norderval, Kjerstin Havnes, Kristoffer Lassen","doi":"10.5324/nje.v31i1-2.5610","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5610","url":null,"abstract":"-","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135617962","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-20DOI: 10.5324/nje.v31i1-2.5612
Annette Halvorsen, Ann Louise Pettersen, Sara Rise Langlo, Horn Siv Anita, Rekand Tiina
The Norwegian Spinal Cord Injury Registry is a national quality registry that just celebrated its 10-year anniversary. The registry contributes to quality improvement in spinal cord injury care in Norway and other Nordic countries. The continuous improvement in clinical practice goes hand-in-hand with the further registry development. Data from the registry are furthermore used in different kinds of research projects. This article aims to provide an overview of how the Norwegian Spinal Cord Injury Registry was established, to share our experiences, insights, lessons learned during its development and ten years in operation, and to highlight its potential.
{"title":"Realizing the potentials of a National Spinal Cord Injury Registry – 10 years of experiences","authors":"Annette Halvorsen, Ann Louise Pettersen, Sara Rise Langlo, Horn Siv Anita, Rekand Tiina","doi":"10.5324/nje.v31i1-2.5612","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5612","url":null,"abstract":"The Norwegian Spinal Cord Injury Registry is a national quality registry that just celebrated its 10-year anniversary. The registry contributes to quality improvement in spinal cord injury care in Norway and other Nordic countries. The continuous improvement in clinical practice goes hand-in-hand with the further registry development. Data from the registry are furthermore used in different kinds of research projects. This article aims to provide an overview of how the Norwegian Spinal Cord Injury Registry was established, to share our experiences, insights, lessons learned during its development and ten years in operation, and to highlight its potential.","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135618512","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-20DOI: 10.5324/nje.v31i1-2.5603
Eva Stensland, Philip Skau
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{"title":"Medisinske kvalitetsregistere i Norge","authors":"Eva Stensland, Philip Skau","doi":"10.5324/nje.v31i1-2.5603","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5603","url":null,"abstract":"-","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135618502","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-20DOI: 10.5324/nje.v31i1-2.5604
Jan Anders Istad, Magne Wang Fredriksen
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{"title":"MS-registeret: meget viktig for MS-pasientene og enda viktigere fremover","authors":"Jan Anders Istad, Magne Wang Fredriksen","doi":"10.5324/nje.v31i1-2.5604","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5604","url":null,"abstract":"-","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135617964","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-10-20DOI: 10.5324/nje.v31i1-2.5602
Eva Stensland
Eva StenslandSenter for klinisk dokumentasjon og evaluering (SKDE)Helse Nord RHF
Eva Stensland临床文献与评估中心（SKDE）Helse Nord RHF
{"title":"Forord","authors":"Eva Stensland","doi":"10.5324/nje.v31i1-2.5602","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5602","url":null,"abstract":"Eva StenslandSenter for klinisk dokumentasjon og evaluering (SKDE)Helse Nord RHF","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135618515","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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