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      The Danish Lung Cancer Registry

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          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Aim of database

          The Danish Lung Cancer Registry (DLCR) was established by the Danish Lung Cancer Group. The primary and first goal of the DLCR was to improve survival and the overall clinical management of Danish lung cancer patients.

          Study population

          All Danish primary lung cancer patients since 2000 are included into the registry and the database today contains information on more than 50,000 cases of lung cancer.

          Main variables

          The database contains information on patient characteristics such as age, sex, diagnostic procedures, histology, tumor stage, lung function, performance, comorbidities, type of surgery, and/or oncological treatment and complications. Since November 2013, DLCR data on Patient -Reported Outcome Measures is also included.

          Descriptive data

          Results are primarily reported as quality indicators, which are published online monthly, and in an annual report where the results are commented for local, regional, and national audits. Indicator results are supported by descriptive reports with details on diagnostics and treatment.

          Conclusion

          DLCR has since its creation been used to improve the quality of treatment of lung cancer in Denmark and it is increasingly used as a source for research regarding lung cancer in Denmark and in comparisons with other countries.

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          Most cited references15

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          The Danish Pathology Register.

          B Larsen, Beth Bjerregaard (2011)
          The National Board of Health, Denmark in 1997 published guidelines for reporting of pathology data and the Danish Pathology Register (DPR) was established. DPR contains patient, pathology, and workload data. All records are subject to error tracing. The DPR covers all pathology data in Denmark. The data is used by the pathologists in the daily diagnostic process. The National Board of Health uses the data in the Danish Cancer Registry and DPR is unique for research as data can be linked to tissue biobanks and clinical databases.
          Article 0 comments Cited 139 times – based on 0 reviews     Review now
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            The EORTC QLQ-LC13: a modular supplement to the EORTC Core Quality of Life Questionnaire (QLQ-C30) for use in lung cancer clinical trials. EORTC Study Group on Quality of Life.

            B Bergman, N. Aaronson, S. Ahmedzai … (1994)
            The EORTC Study Group on Quality of Life has developed a modular system for assessing the quality of life of cancer patients in clinical trials composed of two basic elements: (1) a core quality of life questionnaire, the EORTC QLQ-C30, covering general aspects of health-related quality of life, and (2) additional disease- or treatment-specific questionnaire modules. Two international field studies were carried out to evaluate the practicality, reliability and validity of the core questionnaire, supplemented by a 13-item lung cancer-specific questionnaire module, the EORTC QLQ-LC13. In this paper, the results of an evaluation of the QLQ-LC13 are reported. The lung cancer questionnaire module comprises both multi-item and single-item measures of lung cancer-associated symptoms (i.e. coughing, haemoptysis, dyspnoea and pain) and side-effects from conventional chemo- and radiotherapy (i.e. hair loss, neuropathy, sore mouth and dysphagia). It was administered to patients with non-resectable lung cancer recruited from 17 countries. In total, 883 and 735 patients, respectively, completed the questionnaire prior to and once during treatment. The symptom measures discriminated clearly between patients differing in performance status. All item scores changed significantly in the expected direction (i.e. lung cancer symptoms decreased and treatment toxicities increased) during treatment. With one exception (problems with a sore mouth), the change of toxicity measures over time was related specifically to either chemo- or radiotherapy. However, the single item on neuropathy did not measure adequately the full range of symptoms. The hypothesised scale structure of the questionnaire was partially supported by the data. The multi-item dyspnoea scale met the minimal standards for reliability (Cronbach alpha coefficient > 0.70), while the pain items did not form a scale with reliability estimates acceptable for group comparisons. In conclusion, the results form international field testing lend support to the EORTC QLQ-LC13 as a clinically valid and useful tool for assessing disease- and treatment-specific symptoms in lung cancer patients participating in clinical trials, when combined with the EORTC core quality of life questionnaire. In a few areas, however, the questionnaire module could benefit from further refinements. In addition, its performance over a longer period of time still needs to be investigated.
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              Nationwide quality improvement in lung cancer care: the role of the Danish Lung Cancer Group and Registry.

              T Palshof, Torben Rasmussen, Maria Iachina … (2013)
              To improve prognosis and quality of lung cancer care the Danish Lung Cancer Group has developed a strategy consisting of national clinical guidelines and a clinical quality and research database. The first edition of our guidelines was published in 1998 and our national lung cancer registry was opened for registrations in 2000. This article describes methods and results obtained by multidisciplinary collaboration and illustrates how quality of lung cancer care can be improved by establishing and monitoring result and process indicators. A wide range of indicators was established, validated, and monitored. By registration of all lung cancer patients since the year 2000, data on more than 40,000 patients have been included in the database. Results are reported periodically/quarterly and submitted to formal auditing on an annual basis. Improvements in all outcome indicators are documented and statistically significant. Thus the 1-year overall survival rate has increased between 2003 and 2011 from 36.6% to 42.7%, the 2-year survival rate from 19.8% to 24.3%, and the 5-year survival rate from 9.8% to 12.1%. Five-year survival after surgical resection has increased from 39.5% to 48.1%. Improvements of waiting times, accordance between cTNM and pTNM, and resection rates are documented. The Danish experience shows that a national quality management system including national guidelines, a database with high data quality, frequent reports, audit and commitment from all stakeholders can contribute to improve clinical practice, improve core results, and reduce regional differences.
              Article 0 comments Cited 37 times – based on 0 reviews     Review now
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                Author and article information

                Journal
                Journal ID (nlm-ta): Clin Epidemiol
                Journal ID (iso-abbrev): Clin Epidemiol
                Journal ID (publisher-id): Clinical Epidemiology
                Title: Clinical Epidemiology
                Publisher: Dove Medical Press
                ISSN (Electronic): 1179-1349
                Publication date Collection: 2016
                Publication date (Electronic): 25 October 2016
                Volume: 8
                Pages: 537-541
                Affiliations
                [1 ]Department of Thoracic Surgery, Odense University Hospital
                [2 ]Odense Patient data Exploratory Network (OPEN), Institute of Clinical Research, University of Southern Denmark, Odense
                [3 ]Department of Respiratory Diseases and Allergy, Aarhus University Hospital, Aarhus, Denmark
                Author notes
                Correspondence: Erik Jakobsen, Department of Thoracic Surgery, Odense University Hospital, Sdr. Boulevard 29, DK-5000 Odense, Denmark, Tel +45 2149 1139, Email erik.jakobsen@ 123456rsyd.dk
                Article
                Publisher ID: clep-8-537
                DOI: 10.2147/CLEP.S99458
                PMC ID: 5094603
                PubMed ID: 27822096
                SO-VID: e9cfd2dd-00c9-480e-868a-f5498ad6c778
                Copyright © © 2016 Jakobsen and Rasmussen. This work is published and licensed by Dove Medical Press Limited
                License:

                The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.

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                Subject: Review

                ScienceOpen disciplines: Public health
                Keywords: lung cancer,histology,tumor stage,lung function,performance,comorbidities,diagnostic procedures,type of surgery,oncological treatment,treatment complications
                Data availability:
                ScienceOpen disciplines: Public health
                Keywords: lung cancer, histology, tumor stage, lung function, performance, comorbidities, diagnostic procedures, type of surgery, oncological treatment, treatment complications

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