A Framework for Estimating the Burden of Chronic Diseases: Design and Application in the Context of Multiple Sclerosis
Background: When population-based databases are unavailable, nationwide assessments of the disease burden of multiple sclerosis (MS) resort to clinical, administrative or convenience-sampled data sources, which may produce results of limited external validity. Our aim was to develop a framework for...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2019-09-01
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| Series: | Frontiers in Neurology |
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| Online Access: | https://www.frontiersin.org/article/10.3389/fneur.2019.00953/full |
| _version_ | 1831660912325427200 |
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| author | Marco Kaufmann Milo Alan Puhan Jens Kuhle Özgür Yaldizli Tomas Magnusson Christian P. Kamm Christian P. Kamm Pasquale Calabrese Viktor von Wyl |
| author_facet | Marco Kaufmann Milo Alan Puhan Jens Kuhle Özgür Yaldizli Tomas Magnusson Christian P. Kamm Christian P. Kamm Pasquale Calabrese Viktor von Wyl |
| author_sort | Marco Kaufmann |
| collection | DOAJ |
| description | Background: When population-based databases are unavailable, nationwide assessments of the disease burden of multiple sclerosis (MS) resort to clinical, administrative or convenience-sampled data sources, which may produce results of limited external validity. Our aim was to develop a framework for estimating measures of occurrence of chronic diseases, and more broadly disease burden, that mitigate these limitations and to apply this framework to estimate the prevalence of multiple sclerosis (MS) in Switzerland.Methods: We developed a 7-step framework which implements the combination of several data sources together with a resampling and critical appraisal approach. The framework was applied to estimate the MS prevalence for 2016 in Switzerland, for which four distinct data sources (Swiss MS registry, Swiss national MS treatment registry, MediService database, and Swiss MS cohort study) were combined. Results were reviewed by disease experts and compared to earlier Swiss estimates and current prevalence estimates from other countries.Results: We estimate that in the year 2016 between 14,650 and 15,700 persons with MS have been living in Switzerland, yielding a period prevalence of 174–187/100,000 inhabitants. Compared to the last estimate in 1986, we detected a substantial increase of MS diagnoses which coincides with a higher number of diagnoses in women below the age of 65.Conclusions: Internationally, Switzerland is a high-prevalence country for MS, although estimates were somewhat lower than recent evaluations of Northern European countries. In addition, we corroborate previous reports that the prevalence increase coincides with a higher number of MS diagnoses among women. The proposed framework has wide applicability and the potential to place estimates of disease occurrence and burden with imperfect data availability on more solid grounds. |
| first_indexed | 2024-12-19T18:22:52Z |
| format | Article |
| id | doaj.art-29b538f9632c4bc28e68ea62fd81937a |
| institution | Directory Open Access Journal |
| issn | 1664-2295 |
| language | English |
| last_indexed | 2024-12-19T18:22:52Z |
| publishDate | 2019-09-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Neurology |
| spelling | doaj.art-29b538f9632c4bc28e68ea62fd81937a2022-12-21T20:10:55ZengFrontiers Media S.A.Frontiers in Neurology1664-22952019-09-011010.3389/fneur.2019.00953473621A Framework for Estimating the Burden of Chronic Diseases: Design and Application in the Context of Multiple SclerosisMarco Kaufmann0Milo Alan Puhan1Jens Kuhle2Özgür Yaldizli3Tomas Magnusson4Christian P. Kamm5Christian P. Kamm6Pasquale Calabrese7Viktor von Wyl8Department of Epidemiology, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, SwitzerlandDepartment of Epidemiology, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, SwitzerlandNeurologic Clinic and Policlinic, Departments of Medicine, Biomedicine and Clinical Research, University Hospital and University of Basel, Basel, SwitzerlandNeurologic Clinic and Policlinic, Departments of Medicine, Biomedicine and Clinical Research, University Hospital and University of Basel, Basel, SwitzerlandBusiness Intelligence, MediService, Zuchwil, SwitzerlandNeurology and Neurorehabilitation Centre, Luzerner Kantonsspital, Lucerne, SwitzerlandDepartment of Neurology, Inselspital, University Hospital Bern and University of Bern, Bern, SwitzerlandDivision of Molecular and Cognitive Neuroscience, University of Basel, Basel, SwitzerlandDepartment of Epidemiology, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, Zurich, SwitzerlandBackground: When population-based databases are unavailable, nationwide assessments of the disease burden of multiple sclerosis (MS) resort to clinical, administrative or convenience-sampled data sources, which may produce results of limited external validity. Our aim was to develop a framework for estimating measures of occurrence of chronic diseases, and more broadly disease burden, that mitigate these limitations and to apply this framework to estimate the prevalence of multiple sclerosis (MS) in Switzerland.Methods: We developed a 7-step framework which implements the combination of several data sources together with a resampling and critical appraisal approach. The framework was applied to estimate the MS prevalence for 2016 in Switzerland, for which four distinct data sources (Swiss MS registry, Swiss national MS treatment registry, MediService database, and Swiss MS cohort study) were combined. Results were reviewed by disease experts and compared to earlier Swiss estimates and current prevalence estimates from other countries.Results: We estimate that in the year 2016 between 14,650 and 15,700 persons with MS have been living in Switzerland, yielding a period prevalence of 174–187/100,000 inhabitants. Compared to the last estimate in 1986, we detected a substantial increase of MS diagnoses which coincides with a higher number of diagnoses in women below the age of 65.Conclusions: Internationally, Switzerland is a high-prevalence country for MS, although estimates were somewhat lower than recent evaluations of Northern European countries. In addition, we corroborate previous reports that the prevalence increase coincides with a higher number of MS diagnoses among women. The proposed framework has wide applicability and the potential to place estimates of disease occurrence and burden with imperfect data availability on more solid grounds.https://www.frontiersin.org/article/10.3389/fneur.2019.00953/fullprevalencebenchmark-multipliergeneralizabilityexternal validitySMSRepidemiology |
| spellingShingle | Marco Kaufmann Milo Alan Puhan Jens Kuhle Özgür Yaldizli Tomas Magnusson Christian P. Kamm Christian P. Kamm Pasquale Calabrese Viktor von Wyl A Framework for Estimating the Burden of Chronic Diseases: Design and Application in the Context of Multiple Sclerosis Frontiers in Neurology prevalence benchmark-multiplier generalizability external validity SMSR epidemiology |
| title | A Framework for Estimating the Burden of Chronic Diseases: Design and Application in the Context of Multiple Sclerosis |
| title_full | A Framework for Estimating the Burden of Chronic Diseases: Design and Application in the Context of Multiple Sclerosis |
| title_fullStr | A Framework for Estimating the Burden of Chronic Diseases: Design and Application in the Context of Multiple Sclerosis |
| title_full_unstemmed | A Framework for Estimating the Burden of Chronic Diseases: Design and Application in the Context of Multiple Sclerosis |
| title_short | A Framework for Estimating the Burden of Chronic Diseases: Design and Application in the Context of Multiple Sclerosis |
| title_sort | framework for estimating the burden of chronic diseases design and application in the context of multiple sclerosis |
| topic | prevalence benchmark-multiplier generalizability external validity SMSR epidemiology |
| url | https://www.frontiersin.org/article/10.3389/fneur.2019.00953/full |
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