Verknüpfung von Abrechnungsdaten gesetzlicher Krankenkassen mit Daten epidemiologischer Krebsregister: länderspezifische Möglichkeiten und Limitationen

Pigeot, Iris; Bongaerts, Brenda; Eberle, Andrea; Katalinic, Alexander; Kieschke, Joachim; Luttmann, Sabine; Meyer, Martin; Nennecke, Alice; Rathmann, Wolfgang; Stabenow, Roland; Wilsdorf-Köhler, Heide; Kollhorst, Bianca; Reinders, Tammo

doi:10.1007/s00103-021-03475-x

Cited by 4 publications

(3 citation statements)

References 14 publications

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“…However, until now, there is no established self-administered questionnaire to retrospectively assess exposures to RT, CT, or other cancer therapies as well as to diagnostic procedures in childhood among a population of young adults. Particularly in countries where the linkage of different medical data (e.g., from hospitals, outpatient care, registries, and health insurance companies) has so far only been possible to a limited extent and often only at great expense for reasons of data protection (26) or infrastructural issues, such a questionnaire would be of great benefit to be able to ask study participants in an uncomplicated way for information on cancer therapies received. Therefore, a new self-administered questionnaire, which consists of a total of 62 items in total, was developed and applied within the population of the nested casecontrol study KiKme (27).…”

Section: Introductionmentioning

confidence: 99%

Self-administered questionnaire assessing childhood cancer treatments and associated risks for adverse health outcomes - The KiKme study

et al. 2023

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BackgroundChildhood cancer survivors (CCS) are at particularly high risk for therapy-related late sequelae, with secondary primary neoplasms (SPN) being the most detrimental. Since there is no standardized questionnaire for retrospective assessment of associations between prior cancer treatments and late health effects, we developed a self-administered questionnaire and validated it in a cohort of CCS.MethodsCCS of a first primary neoplasm (FPN, N=340) only or with a subsequent SPN (N=101) were asked whether they had received cancer therapies. Self-reports were compared to participants’ medical records on cancer therapies from hospitals and clinical studies (N=242). Cohen’s Kappa (κ) was used to measure their agreement and logistic regression was used to identify factors influencing the concordance. Associations between exposure to cancer therapies and late health effects (overweight/obesity, diseases of the lipid metabolism and the thyroid gland, cardiovascular diseases, occurrence of SPN) were analyzed in all participants by applying generalized linear mixed models to calculate odds ratios (OR) and 95% confidence intervals (95%CI).ResultsFor CCS of SPN, a perfect agreement was found between self-reports and medical records for chemotherapy (CT, κ=1.0) while the accordance for radiotherapy (RT) was lower but still substantial (κ=0.8). For the CCS of FPN the accordance was less precise (CT: κ=0.7, RT: κ=0.3). Cancer status, tumors of the central nervous system, sex, age at recruitment, vocational training, follow-up time, and comorbidities had no impact on agreement. CCS with exposure to CT were found to be less often overweight or obese compared to those without CT (OR=0.6 (95%CI 0.39; 0.91)). However, they were found to suffer more likely from thyroid diseases excluding thyroid cancers (OR=9.91 (95%CI 4.0; 24.57)) and hypercholesterolemia (OR=4.45 (95%CI 1.5; 13.23)). All other analyses did not show an association.ConclusionOur new questionnaire proved reliable for retrospective assessment of exposure to CT and RT in CCS of SPN. For the CCS of FPN, self-reported RT was very imprecise and should not be used for further analyses. We revealed an association between late health outcomes occurring as hypercholesterolemia and thyroid diseases, excluding thyroid cancer, and the use of CT for the treatment of childhood cancer.

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Section: Introductionmentioning

confidence: 99%

Self-administered questionnaire assessing childhood cancer treatments and associated risks for adverse health outcomes - The KiKme study

et al. 2023

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“…Record linkage of claims and cancer registry data has therefore to be approved by several authorities which makes the approval process challenging. 4 Unlike in other countries, up until recently a unique personal identifier was not available in both data sources to facilitate a deterministic linkage, which makes linkage in Germany often cost-and time-consuming. During the conduct of the study, the personal identifiers used for linkage in cancer registries were 22 control numbers, which are generated from personal characteristics such as last name and day of birth.…”

Section: Introductionmentioning

confidence: 99%

“…In Germany, cancer registries collect data on cancer incidence and mortality for the general population on federal state level, whereas health insurance providers are typically not restricted to federal states, but cover insurants with a place of residence throughout Germany. Record linkage of claims and cancer registry data has therefore to be approved by several authorities which makes the approval process challenging 4 . Unlike in other countries, up until recently a unique personal identifier was not available in both data sources to facilitate a deterministic linkage, which makes linkage in Germany often cost‐ and time‐consuming.…”

Section: Introductionmentioning

confidence: 99%

Record linkage of claims and cancer registries data—Evaluation of a deterministic linkage approach based on indirect personal identifiers

Kollhorst

Reinders

Grill

et al. 2022

Pharmacoepidemiology and Drug

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Purpose In Germany, record linkage of claims and cancer registry data is cost‐ and time‐consuming, since up until recently no unique personal identifier was available in both data sources. The aim of this study was to evaluate the feasibility and performance of a deterministic linkage procedure based on indirect personal identifiers included in the data sources. Methods We identified users of glucose‐lowering drugs with residence in four federal states in Northern and Southern Germany (Bavaria, Bremen, Hamburg, Lower Saxony) in the German Pharmacoepidemiological Research Database (GePaRD) and assessed colorectal and thyroid cancer cases. Cancer registries of the federal states selected all colorectal and thyroid cancer cases between 2004 and 2015. A deterministic linkage approach was performed based on indirect personal identifiers such as year of birth, sex, area of residence, type of cancer and an absolute difference between the dates of cancer diagnosis in both data sources of at most 90 days. Results were compared to a probabilistic linkage using “direct” personal identifiers (gold standard). Results The deterministic linkage procedure yielded a sensitivity of 71.8% for colorectal cancer and 66.6% for thyroid cancer. For thyroid cancer, the sensitivity improved when using only inpatient diagnosis to define cancer in GePaRD (71.4%). Specificity was always above 99%. Using the probabilistic linkage to define cancer cases, the risk for colorectal cancer was estimated 10 percentage points lower than when using the deterministic approach. Conclusions Sensitivity of the deterministic linkage approach appears to be too low to be considered as reasonable alternative to the probabilistic linkage procedure.

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FAIRifizierung von Real World Data für die Gesundheitsforschung

et al. 2022

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Zusammenfassung Hintergrund Die Bereitstellung von Real-World-Daten im Sinne der FAIR-Prinzipien ist die Voraussetzung einer effizienten Ausschöpfung des Potenzials von Gesundheitsdaten für Prävention und Versorgung. Ziel der Arbeit Möglichkeiten und Limitationen der Nachnutzung und Verknüpfung von Gesundheitsdaten in Deutschland werden dargestellt. Material und Methoden Es werden Initiativen zur Schaffung einer verbesserten Forschungsdateninfrastruktur vorgestellt und an einem Beispiel die Einschränkungen illustriert, die das Record Linkage personenbezogener Gesundheitsdaten behindern. Ergebnisse In der Regel erfüllen Gesundheitsdaten in Deutschland nicht die Anforderungen der FAIR-Prinzipien. Ihre Auffindbarkeit scheitert bereits daran, dass entweder keine Metadaten zur Verfügung stehen oder diese nicht standardisiert in suchbare Repositorien eingestellt werden. Die Verknüpfung von personenbezogenen Gesundheitsdaten ist durch restriktive Datenschutzbestimmungen und das Fehlen eines sog. Unique Identifiers extrem eingeschränkt. Datenschutzkonforme Lösungen für die Verknüpfung von Gesundheitsdaten, die in europäischen Nachbarländern erfolgreich praktiziert werden, könnten hier als Vorbild dienen. Schlussfolgerung Die Schaffung einer Nationalen Forschungsdateninfrastruktur (NFDI), insbesondere für personenbezogene Gesundheitsdaten (NFDI4Health), ist nur mit erheblichen Anstrengungen und Gesetzesänderungen realisierbar. Bereits vorliegende Strukturen und Standards, wie sie z. B. durch die Medizininformatik-Initiative und das Netzwerk Universitätsmedizin geschaffen wurden, sowie internationale Initiativen wie z. B. die European Open Science Cloud müssen dabei berücksichtigt werden.

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Verknüpfung von Abrechnungsdaten gesetzlicher Krankenkassen mit Daten epidemiologischer Krebsregister: länderspezifische Möglichkeiten und Limitationen

Cited by 4 publications

References 14 publications

Self-administered questionnaire assessing childhood cancer treatments and associated risks for adverse health outcomes - The KiKme study

Self-administered questionnaire assessing childhood cancer treatments and associated risks for adverse health outcomes - The KiKme study

Record linkage of claims and cancer registries data—Evaluation of a deterministic linkage approach based on indirect personal identifiers

FAIRifizierung von Real World Data für die Gesundheitsforschung

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