Population-based monitoring of cancer patient survival in situations with imperfect completeness of cancer registration.
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ABSTRACT:
SUBMITTER: Brenner H
PROVIDER: S-EPMC2362075 | biostudies-other | 2005 Feb
REPOSITORIES: biostudies-other
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Project description:Background: Socioeconomic inequalities in colorectal cancer survival have been observed in many countries. To overcome these inequalities, the underlying reasons must be disclosed. Methods: Using data from three population-based clinical cancer registries in Germany, we investigated whether associations between area-based socioeconomic deprivation and survival after colorectal cancer depended on patient-, tumor- or treatment-related factors. Patients with a diagnosis of colorectal cancer in 2000-2015 were assigned to one of five deprivation groups according to the municipality of the place of residence using the German Index of Multiple Deprivation. Cox proportional hazards regression models with various levels of adjustment and stratifications were applied. Results: Among 38,130 patients, overall 5-year survival was 4.8% units lower in the most compared to the least deprived areas. Survival disparities were strongest in younger patients, in rectal cancer patients, in stage I cancer, in the latest period, and with longer follow-up. Disparities persisted after adjustment for stage, utilization of surgery and screening colonoscopy uptake rates. They were mostly still present when restricting to patients receiving treatment according to guidelines. Conclusion: We observed socioeconomic inequalities in colorectal cancer survival in Germany. Further studies accounting for potential differences in non-cancer mortality and exploring treatment patterns in detail are needed.
| S-EPMC7326086 | biostudies-literature
Project description:BackgroundBirth registration is a child's first right. Registration of live births, stillbirths and deaths is foundational for national planning. Completeness of birth registration for live births in low- and middle-income countries is measured through population-based surveys which do not currently include completeness of stillbirth or death registration.MethodsThe EN-INDEPTH population-based survey of women of reproductive age was undertaken in five Health and Demographic Surveillance System sites in Bangladesh, Ethiopia, Ghana, Guinea-Bissau and Uganda (2017-2018). In four African sites, we included new/modified questions regarding registration for 1177 stillbirths and 11,881 livebirths (1333 neonatal deaths and 10,548 surviving the neonatal period). Questions were evaluated for completeness of responses, data quality, time to administer and estimates of registration completeness using descriptive statistics. Timing of birth registration, factors associated with non-registration and reported barriers were assessed using descriptive statistics and logistic regression.ResultsAlmost all women, irrespective of their baby's survival, responded to registration questions, taking an average of < 1 min. Reported completeness of birth registration was 30.7% (6.1-53.5%) for babies surviving the neonatal period, compared to 1.7% for neonatal deaths (0.4-5.7%). Women were able to report age at birth registration for 93.6% of babies. Non-registration of babies surviving the neonatal period was significantly higher for home-born children (aOR 1.43 (95% CI 1.27-1.60)) and in Dabat (Ethiopia) (aOR 4.11 (95% CI 3.37-5.01)). Other socio-demographic factors associated with non-registration included younger age of mother, more prior births, little or no education, and lower socio-economic status. Neonatal death registration questions were feasible (100% women responded; only 1% did not know), revealing extremely low completeness with only 1.2% of neonatal deaths reported as registered. Despite > 70% of stillbirths occurring in facilities, only 2.5% were reported as registered.ConclusionsQuestions on birth, stillbirth and death registration were feasible in a household survey. Completeness of birth registration is low in all four sites, but stillbirth and neonatal death registration was very low. Closing the registration gap amongst facility births could increase registration of both livebirths and facility deaths, including stillbirths, but will require co-ordination between civil registration systems and the often over-stretched health sector. Investment and innovation is required to capture birth and especially deaths in both facility and community systems.
| S-EPMC7869445 | biostudies-literature
Project description:BackgroundGastric cancer is the fourth-leading cause of cancer-related deaths worldwide. The only curative treatment options of gastric cancer are perioperative chemotherapy and surgical resection. Many nationwide registries have high validity and provide vast range of opportunities for registry-based research. Cancer diagnoses in the Finnish Cancer Registry (FCR) are reported by pathology laboratories and clinician forms, while discharge diagnosis codes are reported to the Finnish Patient Registry (HILMO) automatically. Finland is known for complete registries but the completeness of gastric cancer in FCR and HILMO remains unclear.ObjectivesThe aim of this study is to assess the registry coverage for gastric cancer in FCR and HILMO and to explore potential reasons for possible differences between these registries.DesignPopulation-based nationwide retrospective cohort study.ParticipantsAll patients diagnosed with gastric cancer in Finland during 1990 to 2014, with follow-up until 31 December 2019.ResultsOut of 21 468 total gastric cancers reported to either registry, 17 107 (79.7%) had a gastric cancer diagnosis in both registries. A substantial decrease from 88.3% to 83.4% was observed in the proportion of cases reported to FCR over time. The completeness of FCR was estimated at 87%. For HILMO, the completeness was 92.7%. Death due to gastric cancer was most common in those with gastric cancer in both registries (80.8%), and less common in those reported to only FCR (36.3%), followed by those reported to only HILMO (9.3%).ConclusionsThe study indicates that gastric cancer is well captured by both FCR and HILMO but there is an alarming decrease in the proportion of cases captured by the FCR over time. Some gastric cancer diagnoses in HILMO might, however, be misclassified due to cancer diagnoses being assigned based on clinical suspicion.
| S-EPMC9020284 | biostudies-literature
Project description:IntroductionIn 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.MethodsReporting 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).ResultsAll 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.DiscussionThe 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.
| S-EPMC10416989 | biostudies-literature
Project description:BackgroundUsing the published survival statistics from cancer registration or population-based studies, we aimed to describe the global pattern and trend of lung cancer survival.MethodsBy searching SinoMed, PubMed, Web of Science, EMBASE, and SEER, all survival analyses from cancer registration or population-based studies of lung cancer were collected by the end of November 2022. The survival rates were extracted by sex, period, and country. The observed, relative, and net survival rates of lung cancer were applied to describe the pattern and time changes from the late 1990s to the early 21st century.ResultsAge-standardized 5-year relative/net survival rate of lung cancer was typically low, with 10%-20% for most regions. The highest age-standardized relative/net survival rate was observed in Japan (32.9%, 2010-2014), and the lowest was in India (3.7%, 2010-2014). In most countries, the five-year age-standardized relative/net survival rates of lung cancer were higher in females and younger people. The patients with adenocarcinoma had a better prognosis than other groups. In China, the highest 5-year overall relative/net survival rates were 27.90% and 31.62% in men and women in Jiangyin (2012-2013).ConclusionOver the past decades, the prognosis of lung cancer has gradually improved, but significant variations were also observed globally. Worldwide, a better prognosis of lung cancer can be observed in females and younger patients. It is essential to compare and evaluate the histological or stage-specific survival rates of lung cancer between different regions in the future.
| S-EPMC10788469 | biostudies-literature
Project description:This review will describe the global patterns and trends of colorectal cancer survival, using data from the population-based studies or cancer registration. We performed a systematic search of China National Knowledge Infrastructure (CNKI), Wanfang Data, PubMed, Web of Science, EMBASE, and SEER and collected all population-based survival studies of colorectal cancer (up to June 2020). Estimates of observed and relative survival rates of colorectal cancer by sex, period, and country were extracted from original studies to describe the temporal patterns and trends from the late 1990s to the early 21st century. Globally, 5-year observed survival rates were higher in Seoul, Republic of Korea (1993-1997; 56.8% and 54.3% for colon and rectum cancers, respectively), Zhejiang province (2005-2010; 52.9% for colon cancer), Tianjin (1991-1999; 52.5% for colon cancer), Shanghai (2002-2006; 50.0% for rectum cancer) of China, and in Japan (1993-1996, 59.6% for colorectal cancer). Five-year relative survival rates of colorectal cancer in the Republic of Korea (2010-2014), Queensland, Australia (2005-2012), and the USA (2005-2009) ranked at relatively higher positions compared to other countries. In general, colorectal cancer survival rates are improving over time worldwide. Sex disparities in survival rates were also observed in the colon, rectum, and colorectal cancers in most countries or regions. The poorest age-specific 5-year relative survival rate was observed in patients > 75 years of age. In conclusion, over the past 3 decades, colorectal cancer survival has gradually improved. Geographic variations, sex differences, and age gradients were also observed globally in colorectal cancer survival. Further studies are therefore warranted to investigate the prognostic factors of colorectal cancer.
| S-EPMC8832952 | biostudies-literature
Project description:A variety of studies in neuroscience/neuroimaging seek to perform statistical inference on the acquired brain image scans for diagnosis as well as understanding the pathological manifestation of diseases. To do so, an important first step is to register (or co-register) all of the image data into a common coordinate system. This permits meaningful comparison of the intensities at each voxel across groups (e.g., diseased versus healthy) to evaluate the effects of the disease and/or use machine learning algorithms in a subsequent step. But errors in the underlying registration make this problematic, they either decrease the statistical power or make the follow-up inference tasks less effective/accurate. In this paper, we derive a novel algorithm which offers immunity to local errors in the underlying deformation field obtained from registration procedures. By deriving a deformation invariant representation of the image, the downstream analysis can be made more robust as if one had access to a (hypothetical) far superior registration procedure. Our algorithm is based on recent work on scattering transform. Using this as a starting point, we show how results from harmonic analysis (especially, non-Euclidean wavelets) yields strategies for designing deformation and additive noise invariant representations of large 3-D brain image volumes. We present a set of results on synthetic and real brain images where we achieve robust statistical analysis even in the presence of substantial deformation errors; here, standard analysis procedures significantly under-perform and fail to identify the true signal.
| S-EPMC4816646 | biostudies-literature
Project description:IntroductionMany national and subnational governments need to routinely measure the completeness of death registration for monitoring and statistical purposes. Existing methods, such as death distribution and capture-recapture methods, have a number of limitations such as inaccuracy and complexity that prevent widespread application. This paper presents a novel empirical method to estimate completeness of death registration at the national and subnational level.MethodsRandom-effects models to predict the logit of death registration completeness were developed from 2,451 country-years in 110 countries from 1970-2015 using the Global Burden of Disease 2015 database. Predictors include the registered crude death rate, under-five mortality rate, population age structure and under-five death registration completeness. Models were developed separately for males, females and both sexes.FindingsAll variables are highly significant and reliably predict completeness of registration across a wide range of registered crude death rates (R-squared 0.85). Mean error is highest at medium levels of observed completeness. The models show quite close agreement between predicted and observed completeness for populations outside the dataset. There is high concordance with the Hybrid death distribution method in Brazilian states. Uncertainty in the under-five mortality rate, assessed using the dataset and in Colombian departmentos, has minimal impact on national level predicted completeness, but a larger effect at the subnational level.ConclusionsThe method demonstrates sufficient flexibility to predict a wide range of completeness levels at a given registered crude death rate. The method can be applied utilising data readily available at the subnational level, and can be used to assess completeness of deaths reported from health facilities, censuses and surveys. Its utility is diminished where the adult mortality rate is unusually high for a given under-five mortality rate. The method overcomes the considerable limitations of existing methods and has considerable potential for widespread application by national and subnational governments.
| S-EPMC5976169 | biostudies-literature
Project description:PurposeThis study addresses the need for a global cancer patient-based standard population that adjusts for the expected age structure of different cancers, thus aiding the comparison of survival estimates worldwide.MethodsCounts of age-specific incidence for 36 cancer sites in 185 countries for the year 2018 were extracted from IARC's GLOBOCAN database of national estimates. We used a multinomial mixture regression to identify clusters of cancer sites with similar age-specific profiles.ResultsAn updated standard entitled the World Cancer Patient Population (WCPP) is presented, derived from the current estimated global numbers of cancer patients that comprises three sets of age-specific weights. Around two-thirds of cancer sites were described by a unique standard, representing the majority of epithelial cancers more often diagnosed at older age groups. The two other standards represent a number of non-epithelial cancer types, and cancers common at younger and older age groups, respectively.ConclusionThe WCPP proposed here provides a contemporary and global means to estimate age-standardised survival for international benchmarking purposes.
| S-EPMC7768180 | biostudies-literature
Project description:BackgroundWith the aim of obtaining more uniformity and quality in the treatment of corpus uteri cancer in Belgium, the EFFECT project has prospectively collected detailed information on the real-world clinical care offered to 4063 Belgian women with primary corpus uteri cancer. However, as data was collected on a voluntary basis, data may be incomplete and biased. Therefore, this study aimed to assess the completeness and potential selection bias of the EFFECT database.MethodsFive databases were deterministically coupled by use of the patient's national social security number. Participation bias was assessed by identifying characteristics associated with hospital participation in EFFECT, if any. Registration bias was assessed by identifying patient, tumor and treatment characteristics associated with patient registration by participating hospitals, if any. Uni- and multivariable logistic regression were applied.ResultsEFFECT covers 56% of all Belgian women diagnosed with primary corpus uteri cancer between 2012 and 2016. These women were registered by 54% of hospitals, which submitted a median of 86% of their patients. Participation of hospitals was found to be biased: low-volume and Walloon-region centers were less likely to participate. Registration of patients by participating hospitals was found to be biased: patients with a less favorable risk profile, with missing data for several clinical-pathological risk factors, that did not undergo curative surgery, and were not discussed in a multidisciplinary tumor board were less likely to be registered.ConclusionsDue to its voluntary nature, the EFFECT database suffers from a selection bias, both in terms of the hospitals choosing to participate and the patients being included by participating institutions. This study, therefore, highlights the importance of assessing the selection bias that may be present in any study that voluntarily collects clinical data not otherwise routinely collected. Nevertheless, the EFFECT database covers detailed information on the real-world clinical care offered to 56% of all Belgian women diagnosed with corpus uteri cancer between 2012 and 2016, and may therefore act as a powerful tool for measuring and improving the quality of corpus uteri cancer care in Belgium.
| S-EPMC9161534 | biostudies-literature