Gesundheitswesen
DOI: 10.1055/a-2776-2703

Colorectal and pancreatic cancers impose profound physical, psychological, and social challenges on patients, underscoring the need for comprehensive assessments of their impact on health-related quality of life (HRQoL). This study aimed to evaluate HRQoL levels in colorectal and pancreatic cancer patients, including the comparison to the general population and the assessment of sociodemographic as well as disease- and treatment-related predictors.The analyses are based on data from a clinical registry of the NCT/UCC Dresden. Patients were recruited during consultation hours between August 2020 and December 2024. Baseline quality of life data and routine data from the tumor documentation system were used. The final analytical sample comprised n=417 patients in the colorectal study group and n=193 patients in the pancreatic study group. Multivariable linear regression analyses were calculated, with results presented as regression coefficients (b) and 95% confidence intervals (CI).Colorectal and pancreatic cancer patients exhibited significantly lower HRQoL compared to the general population, with large differences in social function and medium differences in role function and global health. Pancreatic cancer patients reported lower HRQoL across most domains compared to colorectal cancer patients. In the colorectal study group, statutory health insurance (b=–14.10, CI=–22.54; –5.66), living in rural counties with some urbanization (b=–5.34, CI=–10.51; –0.17) and recent chemotherapy (b=–9.10, CI=–16.36; –1.85) predicted worse global health. With regard to pancreatic cancers, residence in rural counties with some urbanization (b=–10.26, CI=–18.93; –1.59) was associated with worse global health, whereas longer time since diagnosis (b=0.06, CI=0.01; 0.12) was associated with better global health.Sociodemographic factors were the most consistent predictors of HRQoL in patients with pancreatic and colorectal cancer. These findings suggest social disparities, particularly for patients in rural areas and those with lower socioeconomic status. Efforts to improve access to healthcare, provide psychosocial support, and manage symptom burden are critical to enhancing the quality of life for these patients.
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Georg Thieme Verlag KG Oswald-Hesse-Straße 50, 70469 Stuttgart, Germany

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Gesundheitswesen
DOI: 10.1055/a-2780-8325

Linking project data and data from routine clinical practice with healthcare-related data is essential for German healthcare research in order to answer complex questions validly and efficiently. Currently, fragmented data sources, heterogeneous legal requirements, and a lack of infrastructure prevent the optimal use and linking of these data. The Network University Medicine (NUM) is therefore developing a dedicated data infrastructure to link primary study data and routine clinical data with external healthcare-related data (e. g., data from statutory and private health insurance companies, data from cancer registries of the federal states, and data from registration offices). The position paper describes the various data worlds, including examples from epidemiological and clinical research that illustrate the added value and challenges of data linkage. In particular, it presents the new structures of the data acceptance and processing center (DAAeD) in the NUM, which is intended to enable quality-assured, data protection-compliant receipt and linkage of data. Standardized application and approval procedures as well as innovative privacy-preserving record linkage procedures are central to this. International experience, including from Scandinavia and the UK, demonstrates the benefits of such infrastructures for research and healthcare. In conclusion, we advocate rapid political and institutional implementation of the recommendations described in order to make health research in Germany competitive in international comparison and to ensure sustainable, patient-centered health care.Die Verknüpfung von Projektdaten und Daten aus der klinischen Routine mit versorgungsnahen Daten ist für die deutsche Versorgungsforschung essentiell, um komplexe Fragestellungen valide und effizient zu beantworten. Aktuell stehen fragmentierte Datenquellen, heterogene rechtliche Vorgaben und fehlende Infrastrukturen einer optimalen Nutzung und Verknüpfung dieser Daten entgegen. Das Netzwerk Universitätsmedizin (NUM) entwickelt daher eine darauf ausgerichtete Dateninfrastruktur zur Verknüpfung primärer Studiendaten und klinischer Routinedaten mit externen versorgungsnahen Daten (z. B. Daten der gesetzlichen und privaten Krankenversicherungen, Daten der Landeskrebsregister und Daten der Melderegister). Das Positionspapier beschreibt die verschiedenen Datenwelten einschließlich Beispiele aus epidemiologischer und klinischer Forschung, die die Mehrwerte und Herausforderungen der Datenverknüpfung abbilden. Insbesondere werden die neuen Strukturen der Datenannahme- und -aufbereitungsstelle (DAAeD) im NUM dargestellt, die eine qualitätsgesicherte, datenschutzkonforme Annahme und Verknüpfung von Daten ermöglichen soll. Zentral sind vereinheitlichte Antrags- und Genehmigungsverfahren sowie innovative Privacy-Preserving-Record-Linkage-Verfahren. Internationale Erfahrungen, u. a. aus Skandinavien und UK, belegen den Nutzen solcher Infrastrukturen für Forschung und Versorgung. Es wird für eine rasche politische und institutionelle Umsetzung der beschriebenen Empfehlungen plädiert, um die Gesundheitsforschung in Deutschland im internationalen Vergleich wettbewerbsfähig zu machen und eine nachhaltige, patientenzentrierte Gesundheitsversorgung zu sichern.
[...]

Georg Thieme Verlag KG Oswald-Hesse-Straße 50, 70469 Stuttgart, Germany

Article in Thieme eJournals:
Table of contents  |  Abstract  |  open access Full text