Treatable but not curable cancer in England: a retrospective cohort study using cancer registry data and linked data sets.
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ABSTRACT: Objectives
This study estimates the prevalence of cancers that are categorised as treatable but not curable (TbnC) in England. It provides a quantification of the population and a framework to aid identification of this group to enable the design of tailored support services.Design
Through consultation with clinical and data experts an algorithmic definition of TbnC was developed. Using cancer registry data sets, with five other linked data sets held by the National Disease Registration Service, the algorithm was applied as part of this retrospective cohort study to estimate the size and characteristics of the TbnC population.Setting and participants
The health data records of 1.6 million people living with cancer in England in 2015, following a cancer diagnosis between 2001 and 2015, were retrospectively assessed for TbnC status.Results
An estimated 110 615 people in England were living with TbnC cancer at the end of 2015, following identification of TbnC cancer between 2012 and 2015. In addition, 51 946 people fit the initial search criteria but were found to have been in their last year of life at the end of 2015 and therefore considered separately here as end of life cases. A further 57 117 people in England were initially identified as being at high risk of recurrence or having their life being shortened by cancer but did not fit the TbnC conceptual framework and were excluded, but their results are also reported under 'group B'.Conclusions
A population living with TbnC cancer can be identified using data currently collected on a national scale in England. This large population living with TbnC cancer requires personalised treatment and support.
SUBMITTER: White R
PROVIDER: S-EPMC7798682 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundIntraperitoneal/intravenous chemotherapy (IP/IV) was associated with improved survival for ovarian cancer (OC) patients in several randomized clinical trials. However, the uptake of IP/IV in clinical practice is varied due to conflicting evidence about its impact on survival and recurrence. The aim of this study was to explore the uptake of IP/IV treatment and to evaluate its impact on survival and recurrence in OC patients.MethodsDemographic and clinical information on OC patients (N = 2916) who underwent treatment for OC between 2000 and 2017 was obtained from the large healthcare system cancer registry. Duplicate records, grade 1, rare (eg, gelatinous carcinoma), and non-epithelial (eg, granulosa cell carcinoma) tumors were excluded. Kaplan-Meier survival curves were constructed to compare 5- and 10-year survival based on the chemotherapy type, surgery type, and stage. Multivariable Gray's piecewise constant time-varying coefficient models were fitted to evaluate the effect of IP/IV on adjusted hazard ratio (AHR) of OC survival and recurrence adjusting for potential confounders.ResultsThe final sample consisted of 1846 OC patients, 14% (250/1846) of which received IP/IV chemotherapy. IP/IV was significantly associated with improved 10-year survival (P < .001). Multivariable Gray's model demonstrated that IP/IV therapy significantly reduced the AHR of death (AHR = 0.39-1.07, P < .001) with the beneficial effect gradually declining over time. Use of IP/IV chemotherapy had no impact on OC recurrence.ConclusionsThese findings demonstrated that only a small fraction of eligible patients underwent IP/IV chemotherapy. We report a significant 10-year survival, but not necessarily recurrence benefit is associated with IP/IV chemotherapy compared to IV only, suggesting the need for novel ways of identifying patients who may benefit from IP/IV chemotherapy.
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Project description:ObjectiveTo describe a novel England-wide electronic health record (EHR) resource enabling whole population research on covid-19 and cardiovascular disease while ensuring data security and privacy and maintaining public trust.DesignData resource comprising linked person level records from national healthcare settings for the English population, accessible within NHS Digital's new trusted research environment.SettingEHRs from primary care, hospital episodes, death registry, covid-19 laboratory test results, and community dispensing data, with further enrichment planned from specialist intensive care, cardiovascular, and covid-19 vaccination data.Participants54.4 million people alive on 1 January 2020 and registered with an NHS general practitioner in England.Main measures of interestConfirmed and suspected covid-19 diagnoses, exemplar cardiovascular conditions (incident stroke or transient ischaemic attack and incident myocardial infarction) and all cause mortality between 1 January and 31 October 2020.ResultsThe linked cohort includes more than 96% of the English population. By combining person level data across national healthcare settings, data on age, sex, and ethnicity are complete for around 95% of the population. Among 53.3 million people with no previous diagnosis of stroke or transient ischaemic attack, 98 721 had a first ever incident stroke or transient ischaemic attack between 1 January and 31 October 2020, of which 30% were recorded only in primary care and 4% only in death registry records. Among 53.2 million people with no previous diagnosis of myocardial infarction, 62 966 had an incident myocardial infarction during follow-up, of which 8% were recorded only in primary care and 12% only in death registry records. A total of 959 470 people had a confirmed or suspected covid-19 diagnosis (714 162 in primary care data, 126 349 in hospital admission records, 776 503 in covid-19 laboratory test data, and 50 504 in death registry records). Although 58% of these were recorded in both primary care and covid-19 laboratory test data, 15% and 18%, respectively, were recorded in only one.ConclusionsThis population-wide resource shows the importance of linking person level data across health settings to maximise completeness of key characteristics and to ascertain cardiovascular events and covid-19 diagnoses. Although this resource was initially established to support research on covid-19 and cardiovascular disease to benefit clinical care and public health and to inform healthcare policy, it can broaden further to enable a wide range of research.
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