Dataset Information

Completeness and accuracy of national cancer and death registration for outcome ascertainment in trials-an ovarian cancer exemplar.

ABSTRACT:

Background

There is a trend to increasing use of routinely collected health data to ascertain outcome measures in trials. We report on the completeness and accuracy of national ovarian cancer and death registration in the United Kingdom Collaborative Trial of Ovarian Cancer Screening (UKCTOCS).

Methods

Of the 202,638 participants, 202,632 were successfully linked and followed through national cancer and death registries of Northern Ireland, Wales and England. Women with registrations of any of 19 pre-defined ICD-10 codes suggestive of tubo-ovarian cancer or notification of ovarian/tubal/peritoneal cancer from hospital episode statistics or trial sites were identified. Copies of hospital and primary care notes were retrieved and reviewed by an independent outcomes review committee. National registration of site and cause of death as ovarian/tubal/peritoneal cancer (C56/C57/C48) obtained up to 3 months after trial censorship was compared to that assigned by outcomes review (reference standard).

Results

Outcome review was undertaken in 3110 women on whom notification was received between 2001 and 2014. Ovarian cancer was confirmed in 1324 of whom 1125 had a relevant cancer registration. Sensitivity and specificity of ovarian/tubal/peritoneal cancer registration were 85.0% (1125/1324; 95% CI 83.7-86.2%) and 94.0% (1679/1786; 95% CI 93.2-94.8%), respectively. Of 2041 death registrations reviewed, 681 were confirmed to have a tubo-ovarian cancer of whom 605 had relevant death registration. Sensitivity and specificity were 88.8% (605/681; 95% CI 86.4-91.2%) and 96.7% (1482/1533, 95% CI 95.8-97.6%), respectively. When multiple electronic health record sources were considered, sensitivity for cancer site increased to 91.1% (1206/1324, 95% CI 89.4-92.5%) and for cause of death 94.0% (640/681, 95% CI 91.9-95.5%). Of 1232 with cancer registration, 8.7% (107/1232) were wrongly designated as ovarian/tubal/peritoneal cancers by the registry and 4.0% (47/1172) of confirmed tubo-ovarian cancers were mis-registered. In 656 with death registrations, 7.8% (51/656) were wrongly assigned as due to ovarian/tubal/peritoneal cancers while 6.2% (40/645) of confirmed tubo-ovarian cancer deaths were mis-registered.

Conclusion

Follow-up of trial participants for tubo-ovarian cancer using national registry data will result in incomplete ascertainment, particularly of the site due in part to the latency of registration. This can be reduced by using other routinely collected data such as hospital episode statistics. Central adjudication by experts though resource intensive adds value by improving the accuracy of diagnoses.

Trial registration

ISRCTN: ISRCTN22488978 . Registered on 6 April 2000.

SUBMITTER: Kalsi JK

PROVIDER: S-EPMC7831170 | biostudies-literature | 2021 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Completeness and accuracy of national cancer and death registration for outcome ascertainment in trials-an ovarian cancer exemplar.

Kalsi Jatinderpal K JK Ryan Andy A Gentry-Maharaj Aleksandra A Margolin-Crump Danielle D Singh Naveena N Burnell Matthew M Benjamin Elizabeth E Apostolidou Sophia S Habib Mariam M Massingham Susan S Karpinskyj Chloe C Woolas Robert R Widschwendter Martin M Fallowfield Lesley L Campbell Stuart S Skates Steven S McGuire Alistair A Parmar Max M Jacobs Ian I Menon Usha U

Trials 20210125 1

<h4>Background</h4>There is a trend to increasing use of routinely collected health data to ascertain outcome measures in trials. We report on the completeness and accuracy of national ovarian cancer and death registration in the United Kingdom Collaborative Trial of Ovarian Cancer Screening (UKCTOCS).<h4>Methods</h4>Of the 202,638 participants, 202,632 were successfully linked and followed through national cancer and death registries of Northern Ireland, Wales and England. Women with registrati ...[more]

PMID: 33494753

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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.

Project description:BackgroundDeath registration completeness has never been assessed at the county level in China. Such analyses would provide critical intelligence to monitor the performance of the vital registration system and yield adjustment factors to correct death registration data, thereby increasing their policy utility.MethodsWe estimated the completeness of death registration for 31 provinces and 2844 counties of China in 2018 based on death data from the China Cause of Death Reporting System (CDRS) by using the empirical completeness method. We computed the root mean square difference (RMSD) of county-level completeness compared with provincial-level completeness to study intra-provincial variations. A two-level (province and county) logistic regression model was fitted to explore the association between county-level registration completeness and a set of covariates reflecting socioeconomic status, healthcare quality, and specific strategies and regulations designed to improve registration.ResultsIn 2018, the overall death registration completeness for the CDRS in China was 74.2% (95% uncertainty interval [UI] 66.2-80.4), with very little difference for males and females. Geographical differences in completeness were higher across counties than across provinces. The county-level completeness ranged from 2.4% (95% UI 1.0-5.0%) in Burang County, Tibet, to 100.0% (95% UI 99.9-100.0%) in Guandu District, Yunnan. The coastal provinces of Jiangsu, Guangdong, and Fujian, with higher overall completeness, contained counties with low completeness; conversely, the underdeveloped provinces of Guangxi and Guizhou, with lower overall completeness, included some counties with high completeness. GDP, education, population density, minority population, healthcare access, and registration strategies were important drivers of the geographical differences in registration completeness.ConclusionsThere are marked inequalities in registration completeness at the county level and within provinces in China. The socioeconomic condition, the implementation of specific registration-enhancing initiatives, and the availability and quality of medical care were the primary drivers of the observed geographical variation. A more strategic approach, with more research, is required to identify the main reasons for death under-reporting, especially in the poorer performing counties, to guide remedial action.

Project description:BackgroundOne of the fundamental building blocks for determining the burden of disease in populations is to reliably measure the level and pattern of mortality by age and sex. Where well-functioning registration systems exist, this task is relatively straightforward. Results from many civil registration systems, however, remain uncertain because of a lack of confidence in the completeness of death registration. Incomplete registration systems mean not all deaths are counted, and resulting estimates of death rates for the population are then underestimated. Death distribution methods (DDMs) are a suite of demographic methods that attempt to estimate the fraction of deaths that are registered and counted by the civil registration system. Although widely applied and used, the methods have at least three types of limitations. First, a wide range of variants of these methods has been applied in practice with little scientific literature to guide their selection. Second, the methods have not been extensively validated in real population conditions where violations of the assumptions of the methods most certainly occur. Third, DDMs do not generate uncertainty intervals.Methods and findingsIn this paper, we systematically evaluate the performance of 234 variants of DDM methods in three different validation environments where we know or have strong beliefs about the true level of completeness of death registration. Using these datasets, we identify three variants of the DDMs that generally perform the best. We also find that even these improved methods yield uncertainty intervals of roughly +/- one-quarter of the estimate. Finally, we demonstrate the application of the optimal variants in eight countries.ConclusionsThere continues to be a role for partial vital registration data in measuring adult mortality levels and trends, but such results should only be interpreted alongside all other data sources on adult mortality and the uncertainty of the resulting levels, trends, and age-patterns of adult death considered. Please see later in the article for the Editors' Summary.

Project description:BackgroundIn India the number of registered deaths increased substantially in recent years, improving the potential of the civil registration and vital statistics (CRVS) system to be the primary source of mortality data and providing more families of decedents with the benefits of possessing a death certificate. This study aims to identify whether inequalities in the completeness of death registration between states in India, including by sex, have narrowed during this period of CRVS system strengthening.MethodsData used in this study are registered deaths by state and year from 2000 to 2018 (and by sex from 2009 to 2018) reported in the Civil Registration Reports published by the Office of Registrar General of India. Completeness of death registration is calculated using the empirical completeness method. Levels and trends inequalities in completeness are measured in each state a socio-economic indicator - the Socio-Demographic Index (SDI).ResultsEstimated completeness of death registration in India increased from 58% in 2000 to 81% in 2018. Male completeness rose from 60% in 2009 to 85% in 2018 and was much higher than female completeness, which increased from 54 to 74% in the same period. Completeness remained very low in some states, particularly from the eastern (e.g. Bihar) and north-eastern regions. However, in states from the northern region (e.g. Uttar Pradesh) completeness increased significantly from a low level. There was a narrowing of inequalities in completeness according to the SDI during the period, however large inequalities between states remain.ConclusionsThe increase in completeness of death registration in India is a substantial achievement and increases the potential of the death registration system as a routine source of mortality data. Although narrowing of inequalities in completeness demonstrates that the benefits of higher levels of death registration have spread to relatively poorer states of India in recent years, the continued low completeness in some states and for females are concerning. The Indian CRVS system also needs to increase the number of registered deaths with age at death reported to improve their usability for mortality statistics.

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.

Dataset Information

Completeness and accuracy of national cancer and death registration for outcome ascertainment in trials-an ovarian cancer exemplar.

Background

Methods

Results

Conclusion

Trial registration

Publications

Completeness and accuracy of national cancer and death registration for outcome ascertainment in trials-an ovarian cancer exemplar.

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