https://www.ntnu.no/ojs/index.php/norepid <p>Norsk Epidemiologi (The Norwegian Journal of Epidemiology) is published by the Norwegian Epidemiological Association (NOFE). The journal is normally published twice a year; each individual issue covers a specific theme and is edited by one or more guest editors. The guest editors invite prospective authors to submit articles within the specific theme, unsolicited articles are generally not accepted. The main aims for the thematic issues are to provide comprehensive scientific overviews of the specific fields, and of the work going on within these fields in Norway, and partly in other countries. The Board of NOFE approves the themes for the specific issues, and appoints guest editors. All members of NOFE can suggest topics and editors.</p> <p>The Norwegian Journal of Epidemiology is open access, and can be downloaded freely from this website. There is no submission or page charges for manuscripts accepted for publication. The Norwegian Journal of Epidemiology is double-blind peer reviewed and the journal is listed level 1 in the&nbsp;<a href="https://dbh.nsd.uib.no/publiseringskanaler/KanalTidsskriftInfo.action?id=339899&amp;bibsys=false&amp;request_locale=en">Norwegian scientific classification system</a>.</p> en-US <p>Norsk Epidemiologi licenses all content of the journal under a Creative Commons Attribution (CC-BY) licence. This means, among other things, that anyone is free to copy and distribute the content, as long as they give proper credit to the author(s) and the journal. For further information, see Creative Commons website for human readable or lawyer readable versions.</p><p><span>Authors who publish with this journal agree to the following terms:</span></p><p>1. Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a <a href="http://creativecommons.org/licenses/by/3.0/">Creative Commons Attribution License</a> that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.</p><p>2. Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.</p><p><span>3. Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See <a href="http://opcit.eprints.org/oacitation-biblio.html">The Effect of Open Access</a>).<br /></span></p> post@nofe.no (Trond Peder Flaten) trond.p.flaten@ntnu.no (Trond Peder Flaten) Fri, 20 Oct 2023 00:00:00 +0000 OJS 3.2.1.1 http://blogs.law.harvard.edu/tech/rss 60 https://www.ntnu.no/ojs/index.php/norepid/article/view/5639 <p>-</p> - - Copyright (c) 2023 http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5639 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5601 <p>--</p> - - Copyright (c) 2023 - - http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5601 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5602 <p><span style="color: rgba(0, 0, 0, 0.87); font-family: 'Noto Sans', -apple-system, BlinkMacSystemFont, 'Segoe UI', Roboto, Oxygen-Sans, Ubuntu, Cantarell, 'Helvetica Neue', sans-serif; font-size: 14px; font-style: normal; font-variant-ligatures: normal; font-variant-caps: normal; font-weight: 400; letter-spacing: normal; orphans: 2; text-align: start; text-indent: 0px; text-transform: none; widows: 2; word-spacing: 0px; -webkit-text-stroke-width: 0px; white-space: normal; background-color: #ffffff; text-decoration-thickness: initial; text-decoration-style: initial; text-decoration-color: initial; display: inline !important; float: none;">Eva Stensland<br />Senter for klinisk dokumentasjon og evaluering (SKDE)<br />Helse Nord RHF</span></p> Eva Stensland Copyright (c) 2023 Eva Stensland http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5602 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5603 <p>-</p> Eva Stensland , Philip Skau Copyright (c) 2023 Eva Stensland , Philip Skau http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5603 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5604 <p>-</p> Jan Anders Istad , Magne Wang Fredriksen Copyright (c) 2023 Jan Anders Istad , Magne Wang Fredriksen http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5604 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5605 <p>-</p> Bjørn Egil Vikse , Panchakulasingam Kandiah Copyright (c) 2023 Bjørn Egil Vikse , Panchakulasingam Kandiah http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5605 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5606 <p>ABSTRACT<br />The Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP) has systematically collected<br />data on individuals with cerebral palsy (CP) and been a driver of knowledge dissemination for over 20 years.<br />NorCP data have increased the competence of health professionals in both the municipal and specialist<br />healthcare services through publication of multiple scientific articles ranging from risk factors for CP to<br />lifelong interventions, quality improvement projects, and training services. This has led to a streamlined<br />process in the diagnosis and follow-up of children and youths with CP in Norway to ensure that they receive<br />"the right treatment at the right time," regardless of where they live using evidence-based interventions based<br />on needs that are revealed in the registrations.<br />NORSK SAMMENDRAG<br />Norsk kvalitets- og oppfølgingsregister for cerebral parese (NorCP) har systematisk samlet inn data om<br />personer med cerebral parese og vært en pådriver for kunnskapsformidling i over 20 år. NorCP data har økt<br />kompetansen til helsepersonell i både kommune- og spesialisthelsetjenesten gjennom publisering av flere<br />vitenskapelige artikler om risikofaktorer for CP til livslange intervensjoner, kvalitetsforbedringsprosjekter<br />samt kurs og kompetansetjenester. Dette har ført til økt kvalitet på diagnostisering og oppfølging av barn og<br />unge med CP i Norge, som sikrer at de får «riktig behandling til rett tid», uansett hvor de bor i landet med<br />bruk av evidensbaserte intervensjoner basert på behov som avdekkes ved registreringene.</p> Sandra Julsen Hollung, Reidun Jahnsen, Gunvor Lilleholt Klevberg, Nina Kløve , Guro L. Andersen Copyright (c) 2023 Sandra Julsen Hollung, Reidun Jahnsen, Gunvor Lilleholt Klevberg, Nina Kløve , Guro L. Andersen http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5606 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5607 <p>-</p> Ingvild B.M. Tjelmeland, Kristin Alm-Kruse, Johannes Nordsteien Svensøy, Gry Landbø , Jo Kramer-Johansen Copyright (c) 2023 Ingvild B.M. Tjelmeland, Kristin Alm-Kruse, Johannes Nordsteien Svensøy, Gry Landbø , Jo Kramer-Johansen http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5607 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5608 <p>-</p> Grethe Åstrøm Ueland, Tone Vonheim Madsen, Karianne Fjeld Løvaas , John Graham Cooper Copyright (c) 2023 Grethe Åstrøm Ueland, Tone Vonheim Madsen, Karianne Fjeld Løvaas , John Graham Cooper http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5608 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5609 <p>-</p> Tone Prøsch-Bilden , Stig Norderval Copyright (c) 2023 Tone Prøsch-Bilden , Stig Norderval http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5609 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5610 <p>-</p> Stig Norderval, Kjerstin Havnes , Kristoffer Lassen Copyright (c) 2023 Stig Norderval, Kjerstin Havnes , Kristoffer Lassen http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5610 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5611 <p>SAMMENDRAG<br />Norsk Parkinsonregister og biobank fikk status som nasjonalt medisinsk kvalitetsregister av Helsedirektoratet<br />i 2016 og startet datainnsamling fra pasienter med Parkinsons sykdom og atypisk nevrodegenerativ<br />parkinsonisme i desember 2018. Registerets hovedmål er å sikre kvalitet og enhetlig diagnostikk, behandling<br />og oppfølging av pasientgruppen. Dette gjøres ved å samle inn kliniske data, gjennomføre kvalitetsforbedring<br />av behandlingstilbudet og drive forskning på årsaksforhold og sykdomsmekanismer ved å kombinere<br />registerdata og biobankmateriale. Registeret har i løpet av de første fire årene med datainnsamling møtt på<br />en rekke utfordringer knyttet til koronapandemi og ressursknapphet i helsetjenesten. Flere tiltak har blitt<br />gjennomført for å løse dette og vi ser nå tydelig effekt av disse. Ved utgangen av 2022 hadde registeret en<br />dekningsgrad på nesten 22 %.<br />ENGLISH SUMMARY<br />The Norwegian Parkinson’s Registry and Biobank was granted status as a National Quality Registry by the<br />Norwegian Directorate of Health in 2016 and startet registration of patients with Parkinson’s disease and<br />atypical neurodegenerative parkinsonism in December 2018. The main aim of the registry is to ensure quality<br />and uniform diagnostics, treatment and follow-up of the patient group by collecting clinical data, implementing<br />quality offers of treatment and conducting research into causal relationships and disease mechanisms by<br />combining registry data and biobank material. During the first four years of data collection, the Parkinson’s<br />Registry has encountered a number of challenges related to coronavirus pandemic and resource scarcity in<br />the health service. Several measures have been implemented to solve these challenges, and we are now<br />starting to see the effect of these measures. At the end of 2022, a coverage rate of nearly 22 % was achieved. </p> Kenn Freddy Pedersen, Johannes Lange , Eldbjørg Fiske Copyright (c) 2023 Kenn Freddy Pedersen, Johannes Lange , Eldbjørg Fiske http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5611 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5612 <p>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.</p> Annette Halvorsen, Ann Louise Pettersen, Sara Rise Langlo, Horn Siv Anita, Rekand Tiina Copyright (c) 2023 Annette Halvorsen, Ann Louise Pettersen, Sara Rise Langlo, Eldbjørg Fiske http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5612 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5613 <p>-</p> Ove Furnes, Jan-Erik Gjertsen, Eivind Inderhaug, Trude Gundersen, Anne Marie Fenstad, Stein Atle Lie , Geir Hallan Copyright (c) 2023 Ove Furnes, Jan-Erik Gjertsen, Eivind Inderhaug, Trude Gundersen http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5613 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5614 <p>Nasjonalt kvalitetsregister for melanom (heretter Melanomregisteret) skal bidra til å sikre at utredning og<br />behandling av melanompasienter skjer i henhold til anbefalte retningslinjer og er av så høy kvalitet som mulig,<br />uavhengig av hvor i landet man bor. Melanomregisteret er derfor avhengig av innrapporterte data fra sykehusenhetene<br />som utreder og behandler melanompasientene for å kunne måle kvaliteten på helsehjelpen som gis.<br />Dette, sammen med data fra flere kilder, gir grunnlag for målinger som blir presentert som kvalitetsindikatorer<br />bestemt av fagrådet, sammenfattet i en årlig rapport. Hensikten med årsrapportene er at sykehusene bruker<br />resultatene som bakgrunn for å iverksette kvalitetsforbedrende tiltak slik at utredning- og behandlingstilbudet<br />til pasienter med melanom blir så godt som mulig. Melanomregisteret inneholder også pasientrapporterte data<br />siden 2021. Vi ser frem til å få ytterligere kunnskap om hvordan kreftsykdommen og behandlingen påvirker<br />helse og livskvalitet over tid, sammen med pasientenes egne erfaringer med helsetjenesten</p> Hilde Hedemann Brenn, Trude Eid Robsahm, Liv Marit Dørum , Henrik Løvendahl Svendsen Copyright (c) 2023 Hilde Hedemann Brenn, Trude Eid Robsahm, Liv Marit Dørum , Henrik Løvendahl Svendsen http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5614 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5615 <p>The following paper is reprinted with permission from Tidsskrift for Den norske legeforening </p> <p>Publisert: 27. januar 2020. Tidsskr Nor Legeforen. DOI: 10.4045/tidsskr.19.0246 </p> <p>Publisert under åpen tilgang CC BY-ND. Lastet ned fra tidsskriftet.no 4. juni 2023. </p> Torunn Varmdal, Bent Indredavik, Ailan Phan, Hild Fjærtoft Copyright (c) 2023 Torunn Varmdal, Bent Indredavik, Ailan Phan, Hild Fjærtoft http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5615 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5616 <p>-</p> Inge Joa m. flere Copyright (c) 2023 Inge Joa http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5616 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5617 <p>Data from clinical health registries, such as medical quality registries, are often used as basis for healthcare<br />quality indicators (QI). To aid the interpretation of quality indicators and support decisions, it is important<br />to quantify the uncertainty around the QI summary statistics. In this paper we suggest a novel method for<br />quantifying such uncertainty: the Coverage uncertainty range. The method is based on the size of the<br />population present in the register relative to the total relevant population and does not make any assumptions<br />about the sampling strategy or the value of the summary statistic. Furthermore, using both simulated data<br />and real-life data from a Norwegian medical quality registry, we illustrate why using confidence intervals<br />when presenting healthcare quality indicators may lead to erroneous conclusions.</p> Kari Krizak Halle, Tormod Aarlott Digre, Ragna Elise Støre , Torunn Varmdal Copyright (c) 2023 Kari Krizak Halle, Tormod Aarlott Digre, Ragna Elise Støre , Torunn Varmdal http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5617 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5618 <p>Background: Simplified Acute Physiology Score II (SAPS II) is a mortality prediction model widely used<br />to compensate for differences between intensive care units (ICU) in benchmarking and research. Accuracy<br />of SAPS II is sparsely documented. We investigate accuracy by comparing patient journal SAPS II values<br />with registry SAPS II values in the Norwegian Intensive Care and Pandemic Registry (NIPaR).<br />Method: NIPaR personnel collected data from the patient journal during visitations to ICUs in ten different<br />hospitals between 2017 and 2022 while blinded for registry SAPS II data. The patient journal SAPS II values<br />were subsequently compared with the registry SAPS II values.<br />Results: Difference of means for SAPS II score between patient journal and registry data was 5.2 points<br />(95% CI 2.8–7.6; p &lt; 0.001). SAPS II score depended significantly on ICU (p &lt; 0.001) and data origin (p =<br />0.006), whereas the interaction term for these two variables was not significant.<br />Conclusion: We find low accuracy of SAPS II score in a registry setting.</p> Eirik Alnes Buanes, Øyvind Bruserud, Sergio Carracedo Huroz, Andreas Barratt-Due, Hans Flaatten, Reidar Kvåle Copyright (c) 2023 Eirik Alnes Buanes, Øyvind Bruserud, Sergio Carracedo Huroz http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5618 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5619 <p>The following paper is reprinted with permission from Tidsskrift for Den norske legeforening</p> <p>Publisert: 7. oktober 2020. Tidsskr Nor Legeforen. DOI: 10.4045/tidsskr.20.0541</p> Marianne Aardal Grytaas, Lars Breivik, Anders Palmstrøm Jørgensen, Trine Elisabeth Finnes, Lena Adriana Denstad Skavlan, Robert Wiik, Knut Ivar Johansen, Eystein Sverre Husebye Copyright (c) 2023 Marianne Aardal Grytaas, Lars Breivik http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5619 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5620 <p>The following paper is reprinted from the International Urogynecology Journal<br />International Urogynecology Journal (2021) 32:1733–1743<br />https://doi.org/10.1007/s00192-021-04836-5</p> Ole Aleksander Dyrkorn, Anne Cathrine Staff, Sigurd Kulseng-Hanssen, Rune Svenningsen Copyright (c) 2023 Ole Aleksander Dyrkorn, Anne Cathrine Staff http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5620 Fri, 20 Oct 2023 00:00:00 +0000 https://www.ntnu.no/ojs/index.php/norepid/article/view/5621 <p>The following paper is reprinted from ESC Heart Failure </p> <p>ESC Heart Failure 2020; 7: 2904–2911<br />Published online 17 July 2020 in Wiley Online Library (wileyonlinelibrary.com) DOI: 10.1002/ehf2.12900</p> Morten Grundtvig, Torfinn Eriksen-Volnes, Stein Ørn, Eva Kjøl Slind, Lars Gullestad Copyright (c) 2023 Morten Grundtvig, Torfinn Eriksen-Volnes http://creativecommons.org/licenses/by/4.0 https://www.ntnu.no/ojs/index.php/norepid/article/view/5621 Fri, 20 Oct 2023 00:00:00 +0000