Welsh Cancer Research Articles

Inequalities in cancer incidence in Wales by sociodemographic characteristics: a population-based cohort study

BackgroundInternational studies suggest cancer incidence rates may vary by protected characteristics. This study aims to identify cancer incidence inequalities among different sociodemographic characteristics in Wales, including ethnicity, occupation, household tenure, and overcrowding, and determine which specific cancer types disproportionately affect certain groups. MethodsCancer incidence data for 2011–20 were obtained from the Welsh Cancer Intelligence and Surveillance Unit and linked to the National Census (2011) for sociodemographic characteristics. Cancer registration data captures all primary tumours for the resident population of Wales. Missing ethnicity data was supplemented using the SAIL Ethnicity Spine with 97·8% of cancer diagnoses linking to an ethnic group. The analysis considered all cancers combined, lung, female breast, prostate and colorectal cancers. Counts, crude rates, European age-standardised rates, and proportions of cancer incidence were calculated for each ethnic group. FindingsAge-standardised rates for all cancers combined are highest in the white ethnic group, but not statistically significantly higher than the mixed/multiple ethnic groups. Rates in the ‘Black/African/Caribbean/Black British’, ‘Asian/Asian British’ and ‘other ethnic group’ are significantly lower than the white ethnic group (by comparison on 95% confidence intervals). All ethnic groups follow similar trends over time at each stage of diagnosis, and the proportions of cancers diagnosed at stage 3 and 4 are comparable across the different ethnic groups. The proportions of cancers diagnosed at stage 1 and 2 varies across different ethnic groups, being lowest in the mixed/multiple ethnic group and highest in the Asian ethnic group, but these differences aren’t statistically significantly different due to small numbers. The results are due to be finalised in summer 2024. InterpretationSince cancer is more prevalent in older ages, and the white ethnic group have an older population compared to the others, this can partially explain the higher incidence rates amongst this group. However, as incidence rates are still higher in this group after accounting for age, it suggests inequalities may exist for this Population. Findings can help targeted prevention and intervention strategies to reduce inequality. FundingNone received.

Validity and timeliness of cancer diagnosis data collected during a prospective cohort study and reported by the English and Welsh cancer registries: a retrospective, comparative analysis

Cancer places a high burden on society and health-care systems. Cancer research requires high-quality data, which is resource-intensive to obtain. Using administrative datasets such as cancer registries could improve the efficiency of cancer studies if data were valid and timely. We aimed to compare the validity and timeliness of diagnostic cancer data on-site during the SYMPLIFY study to that obtained from the cancer registries of England and Wales. Cancer data were collected from 5461 participants across 44 hospital sites during a prospective observational study in England and Wales, SYMPLIFY (ISRCTN10226380). Linked cancer data were obtained from Digital Health and Care Wales (DHCW), the Welsh Cancer Intelligence and Surveillance Unit (WCISU), and the English National Cancer Registration Dataset (NCRD) and Rapid Cancer Registration Dataset (RCRD), regularly between April, 2022, and September, 2023. The primary objectives of the study were to evaluate the validity (via assessment of the proportion of completed data fields and concordance with SYMPLIFY sites), and timeliness of the data in all datasets, for all cancers diagnosed within 9 months of study enrolment. Data fields investigated were cancer site via International Classification of Disease, 10th Revision (ICD-10) code; cancer morphology via International Classification of Diseases for Oncology, 3rd Edition (ICD-O-3) morphology histology code and broad morphological grouping; overall stage; and TNM classification. For data collected between April, 2022, and September, 2023, completeness at the last data cut available for each dataset ranged from 84% to 100% for ICD-O-3 morphology, from 43% to 100% for overall stage, and from 74% to 83% for TNM stage. The concordance between SYMPLIFY data and NCRD was 96% (95% CI 92-98) for ICD-10, 60% (53-66) for ICD-O-3 morphology, 83% (78-88) for ICD-O-3 broad morphology groupings, 73% (67-78) for stage, and 51% (44-59) for TNM; and with WCISU was 89% (95% CI 81-94) for ICD-10, 63% (53-73) for ICD-O-3 morphology, 80% (70-87) for ICD-O-3 broad morphology groupings, 83% (74-90) for overall stage, and 49% (38-61) for TNM stage. Concordance between SYMPLIFY and RCRD was 95% (95% CI 92-98) for ICD-10, 67% (60-74) for ICD-O-3 morphology, 85% (79-90) for ICD-O-3 broad morphology groupings, and 73% (65-80) for overall stage; and between SYMPLIFY and DHCW was 96% (91-99) for ICD-10, 74% (64-83) for ICD-O-3 morphology, 84% (75-91) for ICD-O-3 broad morphology groupings, and 87% (74-95) for stage. The SYMPLIFY dataset reached completion at 12 months post-enrolment in November, 2022, compared with 13 months for NCRD in December, 2023. RCRD and DHCW reached completion at 13 months and 15 months post-enrolment, in December, 2022, and February, 2023, respectively. We report similar completeness of data fields, concordance, and timeliness between on-site and centrally collected cancer outcomes data. Our findings suggest that central registry data can help alleviate the resource burden in clinical trials and improve cancer research. Cancer registries might need additional resources to provide data for registry-based trials at scale. GRAIL Bio UK.

Trends in the incidence and mortality of cervical, ovarian, and corpus uteri cancers in Wales, UK: A joinpoint regression analysis from 2002 to 2021

ObjectivesThe primary objective of this study was to examine the secular trends of cervical, ovarian, and corpus uteri neoplasm in Wales, UK, over the period from 2002 to 2021. We aimed to identify changes in the incidence and mortality rates of these cancers to inform future healthcare policies and cancer prevention programs. MethodsWe sourced incidence data from 2002 to 2019 and mortality data from 2002 to 2021 from the Welsh Cancer Intelligence and Surveillance Unit. The data were analysed using Joinpoint regression to compute the average annual percentage change (AAPC) in age-standardized incidence rates (ASIR) and mortality rates (ASMR) per 100,000 population for each type of cancer. ResultsThe results showed that the ASIR for cervical cancer remained stable between 2002 and 2019 (AAPC = −0.5; 95 %CI = −1.4–0.4). However, the ASMR significantly declined from 4.88 in 2002–3.03 in 2021 (AAPC = −2.3; 95 %CI = −3.4 to −1.1). The ASIR for ovarian cancer significantly decreased from 27.39 in 2002–17.87 in 2019 (AAPC = −2.6; 95 %CI = −3.0 to −2.1), and the ASMR showed a statistically significant decreasing trend from 15.92 in 2002–11.2 in 2021 (AAPC = −1.7; 95 %CI = −2.5 to −0.9). In contrast, the ASIR for corpus uteri neoplasm significantly increased from 22.24 in 2002–30.41 in 2019 (AAPC = 2.2; 95 %CI = 1.2–3.4), and ASMR also showed a statistically significant increasing trend from 3.27 in 2002–6.42 in 2021 (AAPC = 3.8; 95 %CI = 2.3–5.3). ConclusionsThe study concludes that while the incidence and mortality rates for cervical and ovarian cancers in Wales have significantly decreased, corpus uteri neoplasm rates have increased during the study period. These findings underscore the need for continued efforts to improve early detection and treatment strategies, including national screening programs and public health initiatives, to mitigate the burden of these cancers.

Staff perceptions of the use of the patient dignity inventory (PDI) in a Welsh palliative care service

Background Dignity-related psychological distress can often be unidentified and untreated within palliative care services. The Patient Dignity Inventory (PDI) measures the factors associated with an individual’s sense of dignity-related psychological distress. This study aimed to obtain staff members’ perspectives on the feasibility of utilising the PDI in a palliative care service in Wales. Method Seven experienced staff members were recruited from a Welsh Cancer and Palliative Care service. A thematic analysis of data collected via semi-structured interviews revealed three key themes and nine associated subthemes. Main findings The first theme was ‘Positive Outcomes and Uses’, which included three subthemes: Supporting Staff in their Clinical Practice, Patient Empowerment and Flexibility of Use. The second theme was 'Staff Concerns' that had two subthemes: Causing Distress and Confidence in Existential Conversations. The third theme was 'Barriers and Considerations to Implementation', which included Cultural Considerations, Staff Support and Length of the Measure. Conclusions The findings suggest that the PDI could be valuable to clinical staff in supporting the identification of dignity difficulties and/or distress among patients. However, steps should be taken to address barriers to successful implementation and increased staff training on the measure.

H11 More cancer, better counting or better at diagnosis? The history of skin cancer registration

Abstract Cancer registries help us to understand skin cancer cause, prevalence, treatment and prevention. They provide evidence to gain new healthcare resources. This paper studies the evolution of cancer registries and their relevance to dermatology. In the 16th century, ‘Bills of Mortality’, the first English healthcare registry, catalogued the number and causes of death in London parishes. Originally set up to track bubonic plague, it expanded to cover other diseases, including cancer. The 1728 London ‘General Census of Cancer’ was an early systemic study of cancer. In the 19th and early 20th centuries, hospital censuses often monitored cancers. These were superseded by population-based cancer registries, allowing continuous data collection. An early example is the Hamburg Cancer Registry (1926), which recorded names on a card-based registry and compared them with death certificates. The first national cancer registry was the Danish national cancer registry, formed in 1942. In the UK, the Scottish Cancer Registry was formed in 1958, the Welsh Cancer Intelligence & Surveillance Unit in 1972 and the Northern Ireland Cancer Registry in 1994. In England, eight regional registries were created, with the South West being the first in 1945. The Calman–Hine report (1995) highlighted a desire for a national cancer registry. In 2008, the National Cancer Intelligence Network enabled the assimilation and analysis of data sets from English registries. They merged in 2013, forming the National Cancer Registry and Analysis Service (NCRAS), England. Critically, the 2006 National Health Service act (section 251) allowed cancer data collection without formal consent. Although melanoma data were generally good quality, the inclusion and quality of nonmelanoma skin cancers (NMSCs) were historically less reliable, with improvement since 2013. Historically, the exclusion of NMSCs from published cancer data is common. Wales is the last UK registry to not routinely report NMSC. However, this is due to change in 2024. The ‘global burden of disease tool’ (1990) utilizes various sources, including cancer registry data, to model incidence, mortality and health implications of disease globally, including melanoma and NMSCs. In 2022, the British Association of Dermatologists joined with the NCRAS to develop the Get Data Out skin tool, an annually updated website featuring more granular epidemiological data on skin cancers. High-quality epidemiological data are essential to understanding skin cancer’s regional and chronological variations, and to ensure that resources for healthcare and research are allocated appropriately.

O091 Social deprivation and malignant progression of anal intraepithelial neoplasia

Abstract Introduction Social deprivation is known to be a risk factor for cervical cancer but its influence on progression rate to invasive cancer is less clear. This study aimed to investigate whether deprivation was a risk factor for high grade anal intra-epithelial neoplasia (AINIII) progression to anal squamous cell carcinoma (ASCC). Methods Retrospective analysis of AINIII patients in Southeast Wales between 2000–2021. Deprivation was calculated from postcodes at time of referral, divided into five quintiles (Welsh Index of Multiple Deprivation 2019). Welsh Clinical Portal and Cancer Network Information System Cymru (CaNISC) were utilised to collect patient demographics, histopathology and clinical outcomes. Results Eighty-six AINIII patients were identified. Twenty-nine presented with synchronous ASCC and AINIII. Thirteen progressed to cancer (median 23 months). The proportion of patients in each deprivation quintile was calculated. The association between deprivation and incidence of ASCC at presentation (p=0.93) and AIN transformation to ASCC (p=0.65) were not statistically significant (chi-square analysis). Conclusion No correlation between presentation of anal ASCC or AINIII progression and social deprivation was observed. Due to small sample size, multicentre research is required to investigate this further. Take-home message Social deprivation was not observed to be a risk factor for anal Intra-epithelial Neoplasia III or anal cancer in our cohort. However, further research across a larger sample size is required to investigate this association further.

29P All Wales Medical Genomics Service: Implementation of a comprehensive DNA and RNA next generation sequencing panel to transform Welsh cancer diagnostics for solid and haematological cancers

The All Wales Medical Genomics Service (AWMGS) provides cancer genomic testing (solid tumours and haematological cancers) to all NHS Wales Health Boards, serving a population of 3.5 million people, using multiple NGS panels and a range of other genomic assays e.g. FISH, ddPCR. As part of a continuous service improvement programme, the existing testing strategy was evaluated and a redesign was proposed to enable standardisation of the technical and analysis pathways, ensuring scalability and futureproofing of this rapidly expanding service.

Surgical decisions in older women with early breast cancer: patient and disease factors.

Studies reporting lower rates of surgery for older women with early invasive breast cancer have focused on women with oestrogen receptor (ER)-positive tumours. This study examined the factors that influence receipt of breast surgery in older women with ER-positive and ER-negative early invasive breast cancer. Women aged 50years or above with unilateral stage 1-3A early invasive breast cancerdiagnosed in 2014-2017 were identified from linked English and Welsh cancer registration and routine hospital data sets. Logistic regression analysis was used to evaluate the influence of tumour and patient factors on receipt of surgery. Among 83188 women, 86.8 per cent had ER-positive and 13.2 per cent had ER-negative early invasive breast cancer. These proportions were unaffected by age at diagnosis. Compared with women with ER-negative breast cancer, a higher proportion of women with ER-positive breast cancer presented with low risk tumour characteristics: G1 (20.0 versus 1.5 per cent), T1 (60.8 versus 44.2 per cent) and N0 (73.9 versus 68.8 per cent). The proportions of women with any recorded co-morbidity (13.7 versus 14.3 per cent) or degree of frailty (25 versus 25.8 per cent) were similar among women with ER-positive and ER-negative disease respectively. In women with ER-positive early invasive breast canceraged 70-74, 75-79 and 80years or above, the rate of no surgery was 5.6, 11.0 and 41.9 per cent respectively. Among women with ER-negative early invasive breast cancer, the corresponding rates were 3.8, 3.7 and 12.3 per cent. The relatively lower rate of surgery for ER-positive breast cancer persisted in women with good fitness. The reasons for the observer differences should be further explored to ensure consistency in treatment decisions.

The association of smoking and socioeconomic status on cutaneous melanoma: a population-based, data-linkage, case-control study.

SummaryBackgroundPrevious studies have identified an inverse association between melanoma and smoking; however, data from population‐based studies are scarce.ObjectivesTo determine the association between smoking and socioeconomic (SES) on the risk of development of melanoma. Furthermore, we sought to determine the implications of smoking and SES on survival.MethodsWe conducted a population‐based case–control study. Cases were identified from the Welsh Cancer Intelligence and Surveillance Unit (WCISU) during 2000–2015 and controls from the general population. Smoking and SES were obtained from data linkage with other national databases. The association of smoking status and SES on the incidence of melanoma were assessed using binary logistic regression. Multivariate survival analysis was performed on a melanoma cohort using a Cox proportional hazard model using survival as the outcome.ResultsDuring 2000–2015, 9636 patients developed melanoma. Smoking data were obtained for 7124 (73·9%) of these patients. There were 26 408 controls identified from the general population. Smoking was inversely associated with melanoma incidence [odds ratio (OR) 0·70, 95% confidence interval (CI) 0·65–0·76]. Smoking was associated with an increased overall mortality [hazard ratio (HR) 1·30, 95% CI 1·09–1·55], but not associated with melanoma‐specific mortality. Patients with higher SES had an increased association with melanoma incidence (OR 1·58, 95% CI 1·44–1·73). Higher SES was associated with an increased chance of both overall (HR 0·67, 95% CI 0·56–0·81) and disease‐specific survival (HR 0·69, 95% CI 0·53–0·90).ConclusionsOur study has demonstrated that smoking appeared to be associated with reduced incidence of melanoma. Although smoking increases overall mortality, no association was observed with melanoma‐specific mortality. Further work is required to determine if there is a biological mechanism underlying this relationship or an alternative explanation, such as survival bias. What's already known about this topic? Previous studies have been contradictory with both negative and positive associations between smoking and the incidence of melanoma reported.Previous studies have either been limited by publication bias because of selective reporting or underpowered. What does this study add? Our large study identified an inverse association between smoking status and melanoma incidence.Although smoking status was negatively associated with overall disease survival, no significant association was noted in melanoma‐specific survival.Socioeconomic status remains closely associated with melanoma. Although higher socioeconomic populations are more likely to develop the disease, patients with lower socioeconomic status continue to have a worse prognosis.

UK: NATIONAL COHORT STUDY INVESTIGATING MAJOR LATE EFFECTS OF HODGKIN LYMPHOMA TREATMENTS ON BEHALF OF THE ENGLAND & WALES HODGKIN LYMPHOMA FOLLOW‐UP GROUP

Background: Dramatic improvement in Hodgkin Lymphoma (HL) survival rates over recent decades is one of the greatest success stories in modern Oncology. However it has come at a significant cost: treatment-related toxicity. These issues are epitomised in female HL patients treated at young ages, who have many decades to accumulate late effect burden, and are additionally susceptible to sex-specific outcomes such as breast cancer and premature menopause. In 2003, a national cohort comprising all young women (under <36 years) treated for HL with radiotherapy above the diaphragm in England and Wales since 1960 was established (5,000 women). This quantified the significantly raised risks of breast cancer, particularly those treated with high dose radiotherapy to the breast around menarche. Increased risk of other second malignancies and mortality are also known to be serious consequences of HL treatments. It is hoped de-intensification of treatments will attenuate risk of these long-term effects but this has not yet been definitively demonstrated. These outcomes have been studied in relation to treatment largely in those treated in childhood or in smaller populations than our UK cohort. We have expanded this cohort to include women treated more recently, until 2010, and to encompass all treatment types, to investigate risk factors for the most severe long term effects of HL treatments, and whether risks have diminished over time. Methods: 10,000 women diagnosed with HL under 36 years have been identified from English and Welsh Cancer Registries from the 1960-2010 with >99% complete follow up for mortality until 2018 and are in the process of linking to causes of death. We are currently obtaining treatment and second cancer information for each patient from NHS hospital records across the country. We have achieved this for 7,000 patients so far. We have also obtained linked second cancers from national cancer registrations. Once complete, this will be the much the largest cohort of its kind worldwide, to enable high power analyses of risk factors for a range of serious late effects in Hodgkin Lymphoma. Keywords: Hodgkin lymphoma (HL).

Do Systemic Antibiotics Prior to Cancer Diagnosis Impact on All-Cause Mortality for Malignant Cancers? Findings from Two UK Population-Based Cohort Studies

Background: In mice models of cancer and human tissues samples, disturbance of the gut microbiota can reduce the effectiveness of chemotherapy and immunotherapy. There is limited evidence in humans whether antibiotics impact on the effectiveness of cancer treatments. We evaluated the associations between antibiotic use before cancer diagnoses and long-term mortality. Methods: Primary care data from general practices contributing to the English Clinical Practice Research Datalink (CPRD) and Welsh Secure Anonymised Information Linkage (SAIL) linked to Cancer Registries (CR) and Office for National Statistics (ONS) mortality records were used. Two cohort studies involving cancer patients (15 types) exposed to antibiotics before cancer diagnosis were identified. Recent, previous and past antibiotic users were compared using Cox regression models. Findings: 129 990 cancer patients from the National Cancer Registration and Analysis Service (NCRAS) linked to CPRD and 131 330 from the Welsh Cancer Intelligence Surveillance Unit (WCISU) were included. In comparison with past antibiotic users, patients who used antibiotics in the recent past before their cancer diagnosis and were mainly treated with chemotherapy or immunotherapy presented increased hazards ratio (HR) for mortality consistently in both cohorts; for leukaemia, the HR in NCRAS was 1·40 (95% CI 1·22-1·60), for lymphoma 1·19 (95% CI 1·06-1·33), for melanoma 1·31 (95% CI 1·12-1·54), and for myeloma 1·19 (95% CI 1·04-1·36). HR for cancer of the uterus, breast, urinary, colorectal, and kidney cancer followed the same trend in both CRs. Sensitivity analyses based on general practice records suggested comparable results to those from CRs. Interpretation: This study supports the hypothesis that prior use of antibiotics may reduce the effectiveness of chemotherapy and immunotherapy, potentially through disruption to the gut microbiota. Although not providing definitive results, the biological plausibility of the findings does support the need for judicious use of antibiotics. Funding: Department of Health and NIHR. Declaration of Interest: We declare no competing interests. Ethical Approval: The protocol was approved by the Independent Scientific Advisory Committee for CPRD research (protocol number 18_198) and SAIL’s Information Governance Protocol Review Panel (protocol number 0855).

Risk of subsequent primary neoplasms in survivors of adolescent and young adult cancer (Teenage and Young Adult Cancer Survivor Study): a population-based, cohort study.

SummaryBackgroundFew studies have investigated the risks of subsequent primary neoplasms after adolescent and young adult (AYA) cancer. We investigated the risks of specific subsequent primary neoplasms after each of 16 types of AYA cancer.MethodsThe Teenage and Young Adult Cancer Survivor Study is a population-based cohort of 200 945 survivors of cancer diagnosed when aged 15–39 years in England and Wales from Jan 1, 1971, to Dec 31, 2006. The cohort was established using cancer registrations from the Office for National Statistics and the Welsh Cancer registry. Follow-up was from 5-year survival until the first occurrence of death, emigration, or study end date (Dec 31, 2012). In this analysis, we focus on the risk of specific subsequent primary neoplasms after 16 types of AYA cancer: breast; cervical; testicular; Hodgkin lymphoma (female); Hodgkin lymphoma (male); melanoma; CNS (intracranial); colorectal; non-Hodgkin lymphoma; thyroid; soft-tissue sarcoma; ovarian; bladder; other female genital; leukaemia; and head and neck cancer. We report absolute excess risks (AERs; per 10 000 person-years) and cumulative incidence of specific types of subsequent primary neoplasm after each type of AYA cancer.FindingsDuring the 2 631 326 person-years of follow-up (median follow-up 16·8 years, IQR 10·5–25·2), 12 321 subsequent primary neoplasms were diagnosed in 11 565 survivors, most frequently among survivors of breast cancer, cervical cancer, testicular cancer, and Hodgkin lymphoma. AERs of any subsequent primary neoplasms were 19·5 per 10 000 person-years (95% CI 17·4–21·5) in survivors of breast cancer, 10·2 (8·0–12·4) in survivors of cervical cancer, 18·9 (16·6–21·1) in survivors of testicular cancer, 55·7 (50·4–61·1) in female survivors of Hodgkin lymphoma, and 29·9 (26·3–33·6) in male survivors of Hodgkin lymphoma. The cumulative incidence of all subsequent primary neoplasms 35 years after diagnosis was 11·9% (95% CI 11·3–12·6) in survivors of breast cancer, 15·8% (14·8–16·7) in survivors of cervical cancer, 20·2% (18·9–21·5) in survivors of testicular cancer, 26·6% (24·7–28·6) in female survivors of Hodgkin lymphoma, and 16·5% (15·2–18·0) in male survivors of Hodgkin lymphoma. In patients who had survived at least 30 years from diagnosis of cervical cancer, testicular cancer, Hodgkin lymphoma in women, breast cancer, and Hodgkin lymphoma in men, we identified a small number of specific subsequent primary neoplasms that account for 82%, 61%, 58%, 45%, and 41% of the total excess number of neoplasms, respectively. Lung cancer accounted for a notable proportion of the excess number of neoplasms across all AYA groups investigated.InterpretationOur finding that a small number of specific subsequent primary neoplasms account for a large percentage of the total excess number of neoplasms in long-term survivors of cervical, breast, and testicular cancer, and Hodgkin lymphoma provides an evidence base to inform priorities for clinical long-term follow-up. The prominence of lung cancer after each of these AYA cancers indicates the need for further work aimed at preventing and reducing the burden of this cancer in future survivors of AYA cancer.FundingCancer Research UK, National Institute for Health Research, Academy of Medical Sciences, and Children with Cancer UK.

Improving the quality of care pathways for sarcoma patients and the advantages of using WCISU’s (Welsh Cancer Intelligence Surveillance Unit) national cancer registry

IntroductionSoft Tissue Sarcoma (STS) diagnosis is difficult due to its nature and the variability of its occurrence on the body. To improve patient outcomes a better understanding was needed of the care pathways experienced by the patient from initial presentation to final treatment.&#x0D; Objectives and ApproachSeveral items of information are necessary, within the data, to identify a care pathway. A correct STS diagnosis, a presentation date or first investigation date, a diagnosis date and any subsequent treatment dates. Identifying cases in hospital data, using International Classification of Diseases (ICD10) codes - C40, C41, C47 and C49 - based on cancer site - can miss cases and cause difficulties when trying to distinguish the difference between the investigation and treatment stages. Having access to WCISU’s national cancer registry, proved advantageous and enabled the routine data to be validated.&#x0D; ResultsAttempts to identify differences between investigative and treatment procedures using the procedure codes available in hospital data was unhelpful due to variations in coding.&#x0D; However, WCISU’s national cancer registry records all cases of cancer diagnosed in Wales using both ICD10 and International Classification of Diseases for Oncology codes to record cancer morphology. In addition, it records the date of diagnosis and treatment start dates. Using the cancer registry it was possible to cross-check the cases extracted from the hospital data and identify the diagnosis and treatment dates. By matching the treatment dates back to the hospital data it then became possible to analyse the procedure codes to see how many treatments were being delivered, the type of treatment and the periods covered.&#x0D; Conclusion/ImplicationsOnce accurate diagnosis and treatments dates were identified, it was possible to drill further into the hospital data to see the finer detail of the procedures the patient received. Utilising independent data sources made it possible to develop an enriched view of patient care pathways from diagnosis through to treatment.

Inequalities in health? An update on the effect of social deprivation for patients with breast cancer in South East Wales

BackgroundBreast cancer, historically a disease of more affluent women, has increased in incidence for women from areas of greater social deprivation, yet prognosis is worse for these women. This study identifies differences in presentation, treatment and prognostic factors between the socioeconomic groups. MethodsPatient data obtained from the prospectively maintained Welsh national Cancer Network Information System Cymru, for an 11-year period, were categorised according to Welsh Index of Multiple Deprivation quintiles. Quintiles were compared for differences in variables relating to patient characteristics, detection of cancer, tumour biology and treatment. Results1570 patients were included. Analysis showed that in the more socially deprived quintiles, there are proportionally fewer women being diagnosed through the NHS breast cancer screening programme and as a consequence greater numbers of women from poorer areas being diagnosed outwith the screening age parameters. Screen detection is strongly associated with better prognosis in terms of Nottingham Prognostic Index. Similarly, increasing levels of social deprivation are associated with higher incidence of oestrogen receptor negative and triple negative tumours, both features associated with a shorter disease free and overall survival. Other variables of tumour biology, rates and type of surgical and adjuvant treatment were similar across social deprivation quintiles. ConclusionThere is a trend of reduced early detection of breast cancer in South East Wales in those patients living in areas of higher social deprivation. Given that there is equity in access to treatment within NHS, which is free for patients at the point of care, further study is warranted to address this existing disparity. Population cancer surveillance will need to inform both public health and NHS service responses, to continue to achieve improvements. Health trends may yet alter depending on current and future shifts in governmental health policy.

Management of advanced ovarian cancer in South West Wales − a comparison between primary debulking surgery and primary chemotherapy treatment strategies in an unselected, consecutive patient cohort

ObjectivesThis study represents the first reported outcomes for patients with advanced ovarian cancer (AOC) in South-West Wales undergoing treatment with primary debulking surgery or primary chemotherapy respectively. MethodsThis is a retrospective study of consecutive, unselected patients with advanced ovarian, fallopian tube or primary peritoneal cancer (FIGO III/IV) presenting to a regional cancer centre between October 2007 and October 2014. Patients were identified from Welsh Cancer Services records and relevant data was extracted from electronic National Health Service (NHS) databases. Main outcome measures were median overall survival (OS), progression free survival (PFS) and perioperative adverse events. Hazard ratio estimation was carried out with Cox Regression analysis and survival determined by Kaplan-Meier plots. ResultsOf 220 women with AOC, 32.3% underwent primary debulking surgery (PDS) and 67.7% primary chemotherapy and interval debulking (PCT-IDS). Patients were often elderly (median age 67 years) with a poor performance status (26.5% PS >1). Complete cytoreduction (0cm residual) was achieved in 32.4% of patients in the PDS group and in 50.0% of patients undergoing IDS. Median OS for all patients was 21.9 months (PDS: 27.0 and PCT-IDS: 19.2 months; p >0.05) and median PFS was 13.1 months (PDS: 14.3 months and PCT-IDS: 13.0 months; p >0.05). Median overall and progression free survival for patients achieving complete cytoreduction were 48.0 and 23.2 months respectively in the PDS group and 35.4 months and 18.6 months in the IDS group (p >0.05). ConclusionThis retrospective study of an unselected, consecutive cohort of women with AOC in South West Wales shows comparable survival outcomes with recently published trials, despite the relatively advanced age and poor performance status of our patient cohort. Over the seven-year study period, our data also demonstrated a non-significant trend towards improved survival following primary surgery in patients who achieved maximal cytoreduction. Our future aim therefore is to examine and develop the role of extended surgery in these patients.

IConsent an Electronic Consent Platform with the MS Register

ABSTRACT&#x0D; ObjectivesThe UK MS Register is a large scale observational research platform, capturing data from patients, NHS and carries out linkage with routine data from the SAIL databank.&#x0D; We have 14,000 People with MS (PwMS) submitting Patient Reported Outcome Measures (PRoMS) quarterly and over 3000 patients consenting at NHS Sites around the UK&#x0D; A differentiating factor between Register and previous attempts to capture PRoMS and clinical data was the goal that it be paperless. One area, where paper had to be used, was obtaining informed consent. Clinical participants are consented using a triplicate consent form, one copy for the patient, one for medical notes and one for the Register&#x0D; It’s desirable for patients to be able to electronically consent, providing the following benefits:&#x0D; &#x0D; Tablet computers already in use to collect PRoMS&#x0D; Printing costs&#x0D; Participant expectations&#x0D; Improved content and user experience: improved feedback, of multimedia elements about informed consent&#x0D; Increased familiarity with tablets&#x0D; &#x0D; ApproachChanging consent methodology is complex, all documentation, processes and changes are reviewed by the ethics committee. A privacy protecting, secure software package (iConsent) was developed by modifying an existing package from Welsh Cancer Bank.&#x0D; The software is server based, running on a Secured MS SQLServer 2014 and developed in .net to iOS/Android tablets&#x0D; The practitioner taking consent explains the process, participants then see the approved documentation and materials. Finally they fill in their email address and name, and are presented with the consent form, the participant uses a stylus to sign. The practitioner then countersigns.&#x0D; Once completed a digitally signed, secure pdf is generated on the server. Links are sent by email to the participant, the Register and unit administrator. The pdf is functionally identical to the paper.&#x0D; ResultsThe South West Central Bristol ethics committee approved the software following guidance on security and documentation design. Staff were trained in system usage.&#x0D; A number of patients were successfully e-consented, Of note was a potential issue with some patients and how MS impacts their ability to sign without resting a hand on the screen.&#x0D; ConclusionPatients who have been e-consented have expressed satisfaction in the ease of use and security of the software. Patients being unable to rest their hands on the screen is being examined. Newer tablets can ignore inputs other than the stylus.&#x0D; The MS Register intends to use the software in additional centres to capture patient consent.

40-year trends in an index of survival for all cancers combined and survival adjusted for age and sex for each cancer in England and Wales, 1971–2011: a population-based study

Assessment of progress in cancer control at the population level is increasingly important. Population-based survival trends provide a key insight into the overall effectiveness of the health system, alongside trends in incidence and mortality. For this purpose, we aimed to provide a unique measure of cancer survival. In this observational study, we analysed trends in survival with population-based data for 7·2 million adults diagnosed with a first, primary, invasive malignancy in England and Wales during 1971-2011 and followed up to the end of 2012. We constructed a survival index for all cancers combined using data from the National Cancer Registry and the Welsh Cancer Intelligence and Surveillance Unit. The index is designed to be independent of changes in the age distribution of patients with cancer and of changes in the proportion of lethal cancers in each sex. We analysed trends in the cancer survival index at 1, 5, and 10 years after diagnosis for the selected periods 1971-72, 1980-81, 1990-91, 2000-01, 2005-06, and 2010-11. We also estimated trends in age-sex-adjusted survival for each cancer. We define the difference in net survival between the oldest (75-99 years) and youngest (15-44 years) patients as the age gap in survival. We evaluated the absolute change (%) in the age gap since 1971. The overall index of net survival increased substantially during the 40-year period 1971-2011, both in England and in Wales. For patients diagnosed in 1971-72, the index of net survival was 50% at 1 year after diagnosis. 40 years later, the same value of 50% was predicted at 10 years after diagnosis. The average 10% survival advantage for women persisted throughout this period. Predicted 10-year net survival adjusted for age and sex for patients diagnosed between 2010 and 2011 ranged from 1·1% for pancreatic cancer to 98·2% for testicular cancer. Net survival for the oldest patients (75-99 years) was persistently lower than for the youngest (15-44 years), even after adjustment for the much higher mortality from causes other than cancer in elderly people. These findings support substantial increases in both short-term and long-term net survival from all cancers combined in both England and Wales. The net survival index provides a convenient, single number that summarises the overall patterns of cancer survival in any one population, in each calendar period, for young and old men and women and for a wide range of cancers with very disparate survival. The persistent sex difference is partly due to a more favourable cancer distribution in women than men. The very wide differences in survival for different cancers, and the persistent age gap in survival, suggest the need for renewed efforts to improve cancer outcomes. Future monitoring of the cancer survival index will not be possible unless the current crisis of public concern about sharing of individual data for public health research can be resolved. Cancer Research UK.

Breast cancer in Wales: time trends and geographical distribution.

Breast cancer is the second commonest malignancy in the world. In 2012, approximately 522,000 women died of breast cancer across the world. The aim of this study is to provide an up-to-date analysis of time trends in incidence, geographical distribution, survival and mortality from breast cancer in Wales. Breast cancer cases registered between 1985 and 2012 were identified from the Welsh Cancer Intelligence and Surveillance Unit (WCISU). A Poisson regression model was fitted to assess temporal trends and rate ratios (RR) and 95% confidence intervals (CI) were determined and compared in relation to age, geographical distribution and mortality across time periods. A total of 60,227 women diagnosed with breast cancer were registered with the Welsh cancer registry between 1985 and 2012. The age-standardised incidence rate of breast cancer was 113.4 per 100,000 populations over the entire study period. There has been a significant increase in the incidence of breast cancer over the study period, although a slight decline was recorded towards the end of the study. There is a considerable regional variation in incidence, with a higher incidence rate in the rural areas compared to urban areas (P<0.001). One- and five-year relative survival improved from 83.3 and 64.2 respectively in 1985-1989 to 91.1 and 78.8 respectively in 2000-2004. There has also been a considerable improvement in relative survival across all age groups. Mortality has improved over the study period with the most dramatic decline in the age groups 45-54 and 55-64 years (P<0.001). There has been a significant increase in the incidence of breast cancer in Wales over the last three decades, which is likely to be partly due to the introduction of the National Health Service Breast Screening Programme. Breast cancer incidence is higher in rural areas than urban areas and lower incidence was seen in more deprived areas. There was a considerable decline in mortality rate across almost all age groups, especially in recent years. However, women over the age of 65 years had poorer outcome throughout the study period.

Recent Trends in the Incidence, Geographical Distribution, and Survival From Thyroid Cancer in Wales, 1985–2010

Previous studies of thyroid cancer incidence in Wales have given varying results with suggestions of an excess of cases in geographic areas that were previously exposed to the radioactive fallout from the 1986 Chernobyl nuclear reactor incident. Our objective in this study was to provide an up-to-date comprehensive analysis of time trends in the incidence, geographical distribution, and survival from thyroid cancer in Wales. We identified thyroid cancer cases, registered from 1985 through 2010 in the Welsh Cancer Intelligence and Surveillance Unit (WCISU). Age standardized rates were determined from the European standard population. A Poisson regression model was fitted to assess temporal trends and rate ratios (RRs) and confidence intervals (CIs) were determined and compared across consecutive time periods: 1985-1997 and 1998-2010. Standardized incidence ratios were calculated for each of the 22 local authority areas. Relative survival and Kaplan-Meier curves were computed to analyze all cause and thyroid cancer-specific survival. A total of 1747 thyroid cancer cases were registered from 1985 to 2010. Age standardized incidence rates were 2.8 and 1.2 per 100,000 population per year for females and males respectively. Incidence rates increased with time (RR 1.3 [CI 1.2-1.5], p < 0.001; 1998-2010 vs. 1985-1997). The incidence of papillary cancer increased progressively over the study period (RR 2.22 [CI 1.91-2.57], p < 0.001; 1998-2010 vs. 1985-1997), while rates for other (nonpapillary) histological subtypes remained static (RR 0.95 [CI 0.84-1.08], p = 0.45; 1998-2010 vs. 1985-1997). We identified two geographical areas of increased incidence, but the spatial distribution of cases was inconsistent with exposure to radioactive fallout. Five-year relative survival from all-cause mortality improved from 74.2 [CI 66.8-80.1] in 1985-1989 to 82.6 [CI 77.1-86.9] in 2000-2004, but remained poor for patients over the age of 65 years (p < 0.001, > 65 years vs. 15-64 years) and patients with anaplastic thyroid cancer (p < 0.001; anaplastic vs. other histological varieties). The incidence of thyroid cancer has increased in Wales, predominantly due to an increase in papillary cancers. The current geographical distribution of cases does not support a radiation effect in the region. Survival has remained poor for patients over the age of 65 years and those with anaplastic carcinoma.

A comparative case study of bowel cancer screening in the UK and Australia: Evidence lost in translation?

(i) To document the current state of the English, Scottish, Welsh, Northern Irish and Australian bowel cancer screening programmes, according to seven key characteristics, and (ii) to explore the policy trade-offs resulting from inadequate funding. United Kingdom and Australia. A comparative case study design using document and key informant interview analysis. Data were collated for each national jurisdiction on seven key programme characteristics: screening frequency, population coverage, quality of test, programme model, quality of follow-up, quality of colonoscopy and quality of data collection. A list of optimal features for each of the seven characteristics was compiled, based on the FOBT screening literature and our detailed examination of each programme. Each country made different implementation choices or trade-offs intended to conserve costs and/or manage limited and expensive resources. The overall outcome of these trade-offs was probable lower programme effectiveness as a result of compromises such as reduced screening frequency, restricted target age range, the use of less accurate tests, the deliberate setting of low programme positivity rates or increased inconvenience to participants from re-testing. Insufficient funding has forced programme administrators to make trade-offs that may undermine the potential net population benefits achieved in randomized controlled trials. Such policy compromise contravenes the principle of evidence-based practice which is dependent on adequate funding being made available.