Introduction: In 2013, a new federal law obligated all German federal states to collect additional clinical data in population-based cancer registries as an active tool for monitoring and improving the quality of cancer care, increasing transparency and promoting health research. Now, 10 years later, the current status of the expanded cancer registration is presented, including current figures on cancer in Germany. Methods: Reporting of cancer is mandatory for physicians, and about 5 to 10 reports from different healthcare providers are expected for each case. A uniform national dataset of about 130 items is used, and reports are usually sent electronically to the registry. We used the most recent data available from cancer registries up to the year of diagnosis in 2019. We calculated incidence rates and 5-year relative survival (5YRS) for common cancers. Data on clinical outcomes and benchmarking based on quality indicators (QIs) from guidelines were provided by the Cancer Registry Schleswig-Holstein (CR SH). Results: All federal state cancer registries met most of the previously defined national eligibility criteria. Approximately 505,000 cancer cases were registered in 2019, with breast, prostate, colorectal and lung cancer being the most common cancers. The age-standardised cancer incidence has slightly decreased during the last decade. and spatial heterogeneity can be observed within Germany. 5YRS for all cancers was 67% and 63% for women and men, respectively. Therapy data for rectal cancer in 2019–2021 from the CR SH are shown as an example: 69% of the registered patients underwent surgery, mostly with curative intent (84%) and tumour-free resection (91%). Radiotherapy was given to 33% of the patients, and chemotherapy was given to 40%. Three selected QIs showed differences between involved healthcare providers. Discussion: The implementation of population-based clinical cancer registration can be considered a success. Comprehensive recording of diagnosis, treatment and disease progression and the use of registry data for quality assurance, benchmarking and feedback have been implemented.
(1) Background: Little is known about the health-related quality of life (HRQoL) in very long-term cancer survivors (VLTCS) 10 and more years post-diagnosis. The objective was to compare cancer survivors’ HRQoL 14–24 years post-diagnosis with that of same-aged non-cancer controls, stratified by age, sex, and disease status (disease-free vs. stage IV, recurrence, metastasis, or second cancer). (2) Methods: We recruited 2704 very long-term survivors of breast, colorectal and prostate cancer, and 1765 controls in German multi-regional population-based studies. The HRQoL was assessed by the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). Differences in the HRQoL were estimated with multiple regression, controlling for age, sex (where appropriate), and education. (3) Results: The overall global health status/quality of life of VLTCS more than a decade after diagnosis was slightly higher than that of population controls of the same age, but more symptoms and lower functioning were reported. Differences were small but statistically significant. Results differed by age, sex, and disease status. (4) Conclusions: The findings point out the need for a comprehensive survivorship care program in order to monitor and treat potential late and long-term effects after the diagnosis and treatment of cancer. Survivorship care should be risk-adapted to survivors’ needs according to sociodemographic and clinical factors.
Background: We compared fatigue severity in breast, prostate or colorectal cancer survivors 5–16 years post-diagnosis with cancer-free controls, and examined factors associated with fatigue and its association with all-cause mortality in survivors. Methods: Participants of the CAncEr Survivorship - A multi-Regional (CAESAR) study completed the Fatigue Assessment Questionnaire (FAQ) between 2009 and 2011. The FAQ assesses affective, cognitive, and physical fatigue, and sleep problems. We derived the odds of fatigue using logistic regression with the 75th percentile of population norms as the cut-off. All-cause mortality (up to end 2021) was estimated using Cox regression models. Results: The sample comprised 6057 survivors, of whom approximately one-third reported affective, cognitive, or physical fatigue. Demographic (age, relationship), clinical (chemotherapy), comorbidity (depression), lifestyle, and psychological factors were associated with higher odds of fatigue symptoms and total fatigue. Fatigue symptoms, predominantly physical fatigue, were strongly associated with mortality (unadjusted hazard ratios (HRs) ranged from 1.48 to 2.40). The HRs were attenuated after adjustment for comorbidities and depressive symptoms, although affective and physical fatigue remained independent risk factors for mortality. Conclusions: Demographic, clinical, comorbidity, lifestyle, and psychological factors were associated with fatigue in long-term survivors. Fatigued survivors have a higher mortality risk. Lowering the burden of fatigue by a comprehensive approach might result in better survival.
Many countries have reported survival inequalities due to regional socioeconomic deprivation. To quantify the potential gain from eliminating cancer survival disadvantages associated with area-based deprivation in Germany, we calculated the number of avoidable excess deaths. We used population-based cancer registry data from 11 of 16 German federal states. Patients aged ≥15 years diagnosed with an invasive malignant tumor between 2008 and 2017 were included. Area-based socioeconomic deprivation was assessed using the quintiles of the German Index of Multiple Deprivation (GIMD) 2010 on a municipality level nationwide. Five-year age-standardized relative survival for 25 most common cancer sites and for total cancer were calculated using period analysis. Incidence and number of avoidable excess deaths in Germany in 2013–2016 were estimated. Summed over the 25 cancer sites, 4100 annual excess deaths (3.0% of all excess deaths) could have been avoided each year in Germany during the period 2013–2016 if relative survival were in all regions comparable with the least deprived regions. Colorectal, oral and pharynx, prostate, and bladder cancer contributed the largest numbers of avoidable excess deaths. Our results provide a good basis to estimate the potential of intervention programs for reducing socioeconomic inequalities in cancer burden in Germany.
Background: The objective of this study was to ascertain long‐term cancer survivors' (LTCS') appraisal of medical care and how these perceptions may influence their health and well‐being, including benefit finding (BF) and posttraumatic growth (PTG).Methods: In total, 6952 LTCS from a multiregional population‐based study in Germany completed the Benefit Finding Scale, the Posttraumatic Growth Inventory, the Questionnaire on Stress in Cancer, and self‐designed questions on cognitive appraisal of medical care. The authors explored the mediating role of distress between medical care appraisal and BF and PTG and the possible moderation of time since diagnosis in this relationship.RESULTS: LTCS' medical care appraisals (“no unresolved/untreated symptoms,” “satisfaction with cancer care,” and “satisfaction with care for other diseases”) were positively associated with BF. PTG was positively associated with “no unresolved/untreated symptoms” and negatively associated with “satisfaction with care for other diseases.” Cancer distress partially mediated the associations between appraisals of medical care and BF, between “no unresolved/untreated symptoms” and PTG and between “satisfaction with care for other diseases” and PTG; whereas it totally mediated the association between “satisfaction with cancer care” and PTG. Time was a significant moderator in the model; the negative indirect effect of cognitive appraisal on BF and PTG through cancer distress weakened with longer time since diagnosis.Conclusions: Cancer survivors' medical care appraisal is associated with their perceptions of BF and PTG through distress. Therefore, distress screening could be part of the regular workup to identify distressed cancer survivors who are not satisfied with medical care; these survivors may benefit from interventions to reduce distress and increase BF and PTG.
The aim of this study was (i) to update the reporting of colorectal cancer survival differences over time in the German–Danish border region (Schleswig-Holstein, Southern Denmark, and Zealand) and (ii) to assess the extent to which it can be explained by stage and primary treatment. Incident invasive colorectal cancer cases diagnosed from 2004 to 2016 with a follow-up of vital status through 31 December 2017 were extracted from cancer registries. Analyses were conducted by anatomical subsite and for four consecutive periods. Kaplan–Meier curves and log-rank tests were computed. Cox regression models using data from Schleswig-Holstein from 2004 to 2007 as the reference category were run while controlling for age, sex, stage, and treatment. The cox regression models showed decreasing hazard ratios of death for all three regions over time for both anatomical subsites. The improvement was stronger in the Danish regions, and adjustment for age, sex, stage, and treatment attenuated the results only slightly. In 2014–2016, colon cancer survival was similar across regions, while rectal cancer survival was significantly superior in the Danish regions. Regional survival differences can only partially be explained by differing stage distribution and treatment and may be linked additionally to healthcare system reforms and screening efforts.