Eirik Alnes Buanes, Øyvind Bruserud, Sergio Carracedo Huroz, Andreas Barratt-Due, Hans Flaatten, Reidar Kvåle
{"title":"External validation of SAPS II score reported to the Norwegian Intensive Care and Pandemic Registry (NIPaR)","authors":"Eirik Alnes Buanes, Øyvind Bruserud, Sergio Carracedo Huroz, Andreas Barratt-Due, Hans Flaatten, Reidar Kvåle","doi":"10.5324/nje.v31i1-2.5618","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5618","url":null,"abstract":"Background: Simplified Acute Physiology Score II (SAPS II) is a mortality prediction model widely usedto compensate for differences between intensive care units (ICU) in benchmarking and research. Accuracyof SAPS II is sparsely documented. We investigate accuracy by comparing patient journal SAPS II valueswith registry SAPS II values in the Norwegian Intensive Care and Pandemic Registry (NIPaR).Method: NIPaR personnel collected data from the patient journal during visitations to ICUs in ten differenthospitals between 2017 and 2022 while blinded for registry SAPS II data. The patient journal SAPS II valueswere subsequently compared with the registry SAPS II values.Results: Difference of means for SAPS II score between patient journal and registry data was 5.2 points(95% CI 2.8–7.6; p < 0.001). SAPS II score depended significantly on ICU (p < 0.001) and data origin (p =0.006), whereas the interaction term for these two variables was not significant.Conclusion: We find low accuracy of SAPS II score in a registry setting.","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":"17 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135617963","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":"Et lederperspektiv – nytten av medisinske kvalitetsregistre og hvordan vi bruker disse i forbedringsarbeid og praksisendring","authors":"Bjørn Egil Vikse, Panchakulasingam Kandiah","doi":"10.5324/nje.v31i1-2.5605","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5605","url":null,"abstract":"-","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135617965","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}
Grethe Åstrøm Ueland, Tone Vonheim Madsen, Karianne Fjeld Løvaas, John Graham Cooper
{"title":"Resultater fra Norsk diabetesregister for voksne","authors":"Grethe Åstrøm Ueland, Tone Vonheim Madsen, Karianne Fjeld Løvaas, John Graham Cooper","doi":"10.5324/nje.v31i1-2.5608","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5608","url":null,"abstract":"-","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":"67 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135618509","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}
Kenn Freddy Pedersen, Johannes Lange, Eldbjørg Fiske
{"title":"Norsk Parkinsonregister og biobank","authors":"Kenn Freddy Pedersen, Johannes Lange, Eldbjørg Fiske","doi":"10.5324/nje.v31i1-2.5611","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5611","url":null,"abstract":"SAMMENDRAGNorsk Parkinsonregister og biobank fikk status som nasjonalt medisinsk kvalitetsregister av Helsedirektorateti 2016 og startet datainnsamling fra pasienter med Parkinsons sykdom og atypisk nevrodegenerativparkinsonisme i desember 2018. Registerets hovedmål er å sikre kvalitet og enhetlig diagnostikk, behandlingog oppfølging av pasientgruppen. Dette gjøres ved å samle inn kliniske data, gjennomføre kvalitetsforbedringav behandlingstilbudet og drive forskning på årsaksforhold og sykdomsmekanismer ved å kombinereregisterdata og biobankmateriale. Registeret har i løpet av de første fire årene med datainnsamling møtt påen rekke utfordringer knyttet til koronapandemi og ressursknapphet i helsetjenesten. Flere tiltak har blittgjennomført for å løse dette og vi ser nå tydelig effekt av disse. Ved utgangen av 2022 hadde registeret endekningsgrad på nesten 22 %.ENGLISH SUMMARYThe Norwegian Parkinson’s Registry and Biobank was granted status as a National Quality Registry by theNorwegian Directorate of Health in 2016 and startet registration of patients with Parkinson’s disease andatypical neurodegenerative parkinsonism in December 2018. The main aim of the registry is to ensure qualityand uniform diagnostics, treatment and follow-up of the patient group by collecting clinical data, implementingquality offers of treatment and conducting research into causal relationships and disease mechanisms bycombining registry data and biobank material. During the first four years of data collection, the Parkinson’sRegistry has encountered a number of challenges related to coronavirus pandemic and resource scarcity inthe health service. Several measures have been implemented to solve these challenges, and we are nowstarting to see the effect of these measures. At the end of 2022, a coverage rate of nearly 22 % was achieved.","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":"11 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135617968","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}
Ove Furnes, Jan-Erik Gjertsen, Eivind Inderhaug, Trude Gundersen, Anne Marie Fenstad, Stein Atle Lie, Geir Hallan
{"title":"I starten var det Hofteregisteret – så ble vi flere","authors":"Ove Furnes, Jan-Erik Gjertsen, Eivind Inderhaug, Trude Gundersen, Anne Marie Fenstad, Stein Atle Lie, Geir Hallan","doi":"10.5324/nje.v31i1-2.5613","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5613","url":null,"abstract":"-","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":"6 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135618362","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}
Hilde Hedemann Brenn, Trude Eid Robsahm, Liv Marit Dørum, Henrik Løvendahl Svendsen
{"title":"Nasjonalt kvalitetsregister for melanom bidrar til å styrke kvaliteten på helsehjelpen som gis til melanompasienter","authors":"Hilde Hedemann Brenn, Trude Eid Robsahm, Liv Marit Dørum, Henrik Løvendahl Svendsen","doi":"10.5324/nje.v31i1-2.5614","DOIUrl":"https://doi.org/10.5324/nje.v31i1-2.5614","url":null,"abstract":"Nasjonalt kvalitetsregister for melanom (heretter Melanomregisteret) skal bidra til å sikre at utredning ogbehandling av melanompasienter skjer i henhold til anbefalte retningslinjer og er av så høy kvalitet som mulig,uavhengig av hvor i landet man bor. Melanomregisteret er derfor avhengig av innrapporterte data fra sykehusenhetenesom utreder og behandler melanompasientene for å kunne måle kvaliteten på helsehjelpen som gis.Dette, sammen med data fra flere kilder, gir grunnlag for målinger som blir presentert som kvalitetsindikatorerbestemt av fagrådet, sammenfattet i en årlig rapport. Hensikten med årsrapportene er at sykehusene brukerresultatene som bakgrunn for å iverksette kvalitetsforbedrende tiltak slik at utredning- og behandlingstilbudettil pasienter med melanom blir så godt som mulig. Melanomregisteret inneholder også pasientrapporterte datasiden 2021. Vi ser frem til å få ytterligere kunnskap om hvordan kreftsykdommen og behandlingen påvirkerhelse og livskvalitet over tid, sammen med pasientenes egne erfaringer med helsetjenesten","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":"104 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2023-10-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"135618838","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":"Gratulerer til en sprek 70-åring!","authors":"Ingvild Kjerkol","doi":"10.5324/nje.v30i1-2.4970","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4970","url":null,"abstract":"Kreftsaken vekker et sterkt engasjement hos mange av oss. Det berører oss som venner, pårørende eller som pasienter. Kreftregisteret har ivaretatt det store engasjementet for kreftsaken og omsatt det til innsats. Det er derfor med stor glede jeg hilser Kreftregisteret på 70-års dagen.","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46432575","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}
R. Troisi, I. Glimelius, T. Grotmol, M. Gissler, C. Kitahara, Ording Anne Gulbech, S. M. M. Sæther, Sköld Camilla, Sørensen Henrik Toft, B. Trabert, T. Bjørge
{"title":"The role of pregnancy in maternal cancer risk: Epidemiologic evidence from the Nordic Countries Linked Birth and Cancer Registries Cohort Project","authors":"R. Troisi, I. Glimelius, T. Grotmol, M. Gissler, C. Kitahara, Ording Anne Gulbech, S. M. M. Sæther, Sköld Camilla, Sørensen Henrik Toft, B. Trabert, T. Bjørge","doi":"10.5324/nje.v30i1-2.4984","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4984","url":null,"abstract":"Rebecca Troisi, Ingrid Glimelius, Tom Grotmol, Mika Gissler, Cari M. Kitahara, Anne Gulbech Ording, Solbjørg Makalani Myrtveit Sæther, Camilla Sköld, Henrik Toft Sørensen, Britton Trabert and Tone Bjørge: The role of pregnancy in maternal cancer risk: Epidemiologic evidence from the Nordic Countries Linked Birth and Cancer Registries Cohort Project","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":"74 1","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"70786759","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":"Samle, telle, regne, fortolke – tilbakeblikk på Kreftregisterets statistikkproduksjon og forskning gjennom 70 år","authors":"T. K. Grimsrud","doi":"10.5324/nje.v30i1-2.4989","DOIUrl":"https://doi.org/10.5324/nje.v30i1-2.4989","url":null,"abstract":"The Cancer Registry of Norway was established 1952 with important initiatives and impetus from WHO and The Norwegian Cancer Society. The main purpose of the Registry has been to describe and explain trends and frequencies in cancer incidence, to analyse the need for cancer prevention and therapy, inclusive of aetiological research, and to study the effects of cancer control. The first report on cancer incidence covering 1953–1954 was published in 1959. In the 1950s, stomach cancer was the most common cancer among men and women combined, breast cancer was the most frequent cancer in women, and lung cancer was rising in men (observed in the mortality rates). Identification and the full understanding of different aspects of smoking and cancer remained a challenge from the 1950s through the 1980s, nationally and internationally. From 1977 to 1989, the Cancer Registry produced incidence reports every year with tables presenting absolute numbers and crude rates. In the 1990s, age-standardisation appeared in routine data, both in national, county, and historical rates. During the initial decades, important scientific support was received from Denmark, UK and the USA. Nordic co-operation has always been vital for exchange of experience, for comparisons, and for addressing rare cancer forms. Studies of occupational cancer emerged from the early 1970s, starting with nickel refiners and asbestos cement workers. The number of scientific publications and defended doctoral theses rose markedly during the 1990s and after, with projects directed towards aetiology (lifestyle, medication, occupation, environmental exposures), early diagnosis and screening, clinical issues, predictions, survival, biomarkers, and socio-economic factors.\u0000 \u0000 ","PeriodicalId":35548,"journal":{"name":"Norsk Epidemiologi","volume":" ","pages":""},"PeriodicalIF":0.0,"publicationDate":"2022-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42951694","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}