Epidermolysis bullosa (EB) comprises a group of rare genetic blistering disorders with variable severity. Epidemiological studies on EB have previously often relied on data from specialist centres. However, many patients are managed outside of this setting. This national retrospective cohort study identified all cases of EB in England from April 1997 to April 2024 using International Classification of Diseases 10th Revision code Q81. Records were obtained from NHS England’s national Hospital Episode Statistics (HES) inpatient and outpatient data and data from the National Congenital Anomaly and legacy regional congenital anomaly registers. Cases were linked to primary care prescription data from the National Health Service Business Services Authority and mortality data from the Office for National Statistics. Crude counts and point prevalence per million in 2023 in England were calculated. Patient sociodemographic factors, treatments, prescriptions and mortality rates were described. In total, 3419 patients with EB were identified, of whom 2980 were alive as of June 2023, resulting in a prevalence of 51.7 per million [95% confidence interval (CI) 49.8–53.5]. The most common subtype was unspecified EB (n = 1442), with a prevalence of 25.0 per million (95% CI 23.7–26.3), followed by EB simplex (n = 765; prevalence 13.3, 95% CI 12.3–14.2), dystrophic EB (n = 512; prevalence 8.9, 95% CI 8.1–9.7), other EB (n = 235; prevalence 4.1, 95% CI 3.6–4.6) and severe junctional EB (n = 26; prevalence 0.5, 95% CI 0.3–0.7). Overall, 66% of patients identified as White ethnicity, followed by 10% as Asian ethnicity; however, 18% had missing ethnicity data. Female patients comprised 54% of cases. In total, 21% lived in areas of the lowest deprivation, compared with 16% in the quintile of the most deprived population. During the follow-up 481 of 3419 (14%) patients died, and 4.6% died before age 15 years, with severe junctional EB showing a median age at death of < 6 months. In the last 5 years of data, 123 of 160 (76.9%) patients underwent upper gastrointestinal tract procedures. Analysis of the community prescriptions dataset showed that 819 915 items (412 882 prescriptions) were issued from April 2018 to September 2024. Of these, 23.4% were dressings, followed by 14.8% central nervous system and 9.4% cardiovascular system medications, amounting to a total prescription cost of £62.2 million. The annual median cost per patient (2019–2023) was £244 (interquartile range £55.2 to £1027), which was highest in patients with dystrophic EB (median £735, interquartile range £152 to £6145). This is the first population-level study of EB and presents the largest and most comprehensive national EB dataset reporting prevalence, demographics and treatments for EB. It highlights the utility of national datasets in understanding rare conditions and supporting improvements in patient care.

Objectives To establish a methodology to categorise urgent suspected cancer (USC) referrals in England and use these categories to understand individual patient referral patterns by demographic characteristics, financial year and referral pathway.Design Cross-sectional population-based cohort study.Setting From Cancer Waiting Times data, linked to demographic information held by the National Disease Registration Service, referral-level data on all USC referrals in England between 1 April 2013 and 31 March 2018.Participants After restricting records to those with an English postcode at referral and with complete demographic information, 9 524 435 referrals were identified for 7 542 592 patients.Primary and secondary outcome measures USC referrals were categorised into first and subsequent USC referrals, based primarily on intervals between referral dates. Our primary outcome was to describe the distribution of referral categories by financial year, suspected cancer referral type and four demographic variables. Our secondary aim was to understand which suspected cancer referral types were found in combination within the first 4 months.Results During the study period, 7.5 million people had an USC referral, with one in five having more than one referral, with 9.5 million referrals in total. Referrals were categorised as first (91.1%) and subsequent (8.9%) USC referrals. The relative increase in the number of referrals across the study period was largest (78.2%) for subsequent USC referrals.Subsequent referrals were most common in the gynaecological (10%), lung (10%) and haematological cancer pathways (12%).Suspected lower gastrointestinal referrals were most frequently included in a pair of USC referrals; it was one of the five most common pairings for 14 out of 16 referral type pathways, contributing to 30% of upper gastrointestinal USC referral pairings.Conclusion Multiple USC referrals increased in the study period, particularly within a year of the first referral. Common referral pairings suggest opportunities for pathway reorganisation where common non-specific symptoms result in multiple USC referrals.

Objective: No standardised approach exists to provide advice after urgent suspected cancer (USC) referral when cancer is not found. This study aimed to assess preferences and acceptability of receiving advice after USC referral related to: 1) managing ongoing symptoms, 2) responding to early symptoms of other cancers, 3) cancer screening, 4) reducing risks of future cancer. Methods: 2,541 patients from two English NHS Trusts were mailed a survey 1-3 months after having no cancer found following urgent suspected gastrointestinal or head and neck cancer referral. Participants were asked about: willingness to receive advice; prospective acceptability; preferences related to mode, timing and who should provide advice; and previous advice receipt. Results: 406 patients responded (16.0%) with 397 in the final analyses. Few participants had previously received advice, yet most were willing to. Willingness varied by type of advice: fewer were willing to receive advice about early symptoms of other cancers (88.9%) than advice related to ongoing symptoms (94.3%). Acceptability was relatively high for all advice types. Reducing the risk of future cancer advice was more acceptable. Acceptability was lower in those from ethnic minority groups, and with lower levels of education. Most participants preferred to receive advice from a doctor; with results or soon after; either face to face or via the telephone. Conclusions: There is a potential unmet need for advice after USC referral when no cancer is found. Equitable intervention design should focus on increasing acceptability for people from ethnic minority groups and those with lower levels of education.

Background Following referral for investigation of urgent suspected cancer within the English National Health Service referral system, 7% of referred individuals are diagnosed with cancer. This study aimed to investigate the risk of cancer occurrence within 1-5 years of finding no cancer following an urgent suspected cancer referral. Methods This national cohort study used urgent suspected cancer referral data for England from the Cancer Waiting Times dataset and linked it with cancer diagnosis data from the National Cancer Registration dataset. Data were extracted for the eight most commonly referred to urgent suspected cancer referral pathways (breast, gynaecological, head and neck, lower and upper gastrointestinal, lung, skin, and urological) for the period April 1, 2013, to March 31, 2014, with 5-year follow-up for individuals with no cancer diagnosis within 1 year of referral. The primary objective was to investigate the occurrence and type of subsequent cancer in years 1-5 following an urgent suspected cancer referral when no cancer was initially found, both overall and for each of the eight referral pathways. The numbers of subsequent cancers were compared with expected cancer incidence in years 1-5 following referral, using standardised incidence ratios (SIRs) based on matched age-gender distributions of expected cancer incidence in England for the same time period. The analysis was repeated, stratifying by referral group, and by calculating the absolute and expected rate of all cancers and of the same individual cancer as the initial referral.Findings Among 1 center dot 18 million referrals without a cancer diagnosis in years 0-1, there were 63 112 subsequent cancers diagnosed 1-5 years post-referral, giving an absolute rate of 1338 (95% CI 1327-1348) cancers per 100 000 referrals per year (1038 [1027-1050] in females, 1888 [1867-1909] in males), compared with an expected rate of 1054 (1045-1064) cancers per 100 000 referrals per year (SIR 1 center dot 27 [95% CI 1 center dot 26-1 center dot 28]). The absolute rate of any subsequent cancer diagnosis 1-5 years after referral was lowest following suspected breast cancer referral (746 [728-763] cancers per 100 000 referrals per year) and highest following suspected urological (2110 [2070-2150]) or lung cancer (1835 [1767-1906]) referral. For diagnosis of the same cancer as the initial referral pathway, the highest absolute rates were for the urological and lung pathways (1011 [984-1039] and 638 [598-680] cancers per 100 000 referrals per year, respectively). The highest relative risks of subsequent diagnosis of the same cancer as the initial referral pathway were for the head and neck pathway (SIR 3 center dot 49 [95% CI 3 center dot 22-3 center dot 78]) and lung pathway (3 center dot 00 [2 center dot 82-3 center dot 20]). Interpretation Cancer risk was higher than expected in the 5 years following an urgent suspected cancer referral. The potential for targeted interventions, such as proactive monitoring, safety-netting, and cancer awareness or risk reduction initiatives should be investigated.

Objective: This study investigated perspectives of healthcare professionals (HCPs) on the feasibility of giving additional support to patients after cancer is not found following urgent referral. We sought to understand key facilitators or barriers to offering such support.Methods: A convenience sample of primary and secondary care healthcare professionals (n = 36) participated in semi-structured interviews. Interviews were transcribed verbatim and analysed using Framework Analysis, inductively and deductively, guided by the Theoretical Domains Framework.Results: HCPs indicated that support should be offered if proven to be efficacious. It needs to avoid potential negative consequences such as patient anxiety and information overload. HCPs were more hesitant about whether support could feasibly be offered, due to resource restrictions and perceived remit of the urgent pathway for suspected cancer.Conclusion: HCP support after discharge from urgent cancerreferral pathways needs to be resource efficient, developed in collaboration with patients and should have proven efficacy. Development of brief interventions for delivery by a range of staff, and use of technology could mitigate barriers to implementation.Practice implications: Changes to discharge procedures to provide information, endorsement or direction to ser-vices could offer much needed support. Additional support would need to overcome logistical challenges and address limited capacity.

Background There is a growing appreciation of the importance of quality of life (QoL) alongside survival of cancer. The 2019 NHS Long Term Plan highlights the need to: 'Introduce an innovative QoL metric to track and respond to the long-term impact of cancer'. A cancer QoL Survey has been jointly initiated by NHS England and NHS Improvement, and NDRS at NHS Digital, with Quality Health managing invites and responses (http://www.cancerqol.england.nhs.uk/index.html). Methods Patients (≥16 years old) are identified 18 months post-diagnosis from the National Cancer Registration Dataset in England. Each month, newly eligible patients are invited to complete the survey online, with a reminder and paper copy sent 3 weeks later. The survey uses the validated EQ-5D-5L and EORTC QLQ-C30 QoL instruments. From September 2020, the QoL survey was piloted for 10% of breast, colorectal and prostate cancer cases, with expansion to all cases for these cancers from December 2020. From July 2021, a pilot of 10% of all other cancer cases was included, before expansion to all cancer cases (ICD-10 C00-C97 excluding C44) from October 2021. Results 108,416 questionnaire invites, up to December 2021, have been sent and 53,960 responses received by 15/02/2021 (response rate 50%). By cancer site, the response rates (number of responses/invites) are: breast 48% (18,202/37,718); colorectal 51% (10,288/20,195); prostate 54% (19,260/35,371); and all other cancer sites 41% (6,210/15,132). Results from the QoL are presented in a public-facing dashboard (https://www.cancerdata.nhs.uk/cancerqol), which allows comparisons of survey responses to general population data and filtering by cancer site and geography. QoL comparisons by patient factors are also possible e.g. age and sex. For invites September 2020-July 2021 (responses received by 12/09/2021), breast, colorectal and prostate cancer respondents rate their overall health (EQ-5D-5L Index) highly (mean (95% CI): 75.2 (75.0–75.5)), but lower than the general population (81.8 (81.3–82.3), p<0.001). They are significantly more likely to report a problem across all five aspects of health than the general population: mobility 40.2% (95% CI: 39.7–40.8%) vs 24.0% (23.0–25.0%); self-care 16.6% (16.2–17.0%) vs 8.5% (7.9–9.2%); usual activities 47.6% (47.1–48.2%) vs 21.8% (20.8–22.7%); pain and discomfort 60.9% (60.4–61.5%) vs 48.6% (47.4–49.7%); and anxiety and depression 47.9% (47.3–48.4%) vs 33.1% (32.0–34.2%). These differences are particularly marked for usual activities. Conclusion This survey is the first to give detailed, continuous data on the impact of cancer on QoL and will help to empower patients, and to inform research and the improvement of cancer services.

OBJECTIVE:To assess the impact of the fourth Be Clear on Cancer (BCoC) 'Blood in Pee' (BiP) campaign (July to September 2018) on bladder and kidney cancer symptom awareness and outcomes in England.METHODS:In this uncontrolled before and after study, symptom awareness and reported barriers to GP attendance were assessed using panel and one-to-one interviews. The Health Improvement Network (THIN), National Cancer Registration and Analysis Service (NCRAS) and NHS Cancer Waiting Times (CWT) data were analysed to assess the impact on GP attendances, urgent cancer referrals, cancer diagnoses and 1-year survival. Analyses used Poisson, negative binomial and Cox regression.RESULTS:Symptom awareness and intention to consult a GP after one episode of haematuria increased following the campaign. GP attendance with haematuria (rate ratio (RR) 1.17, 95% confidence interval (CI): 1.07-1.28) and urgent cancer referrals (RR 1.18 95% CI: 1.08-1.28) increased following the campaign. Early-stage diagnoses increased for bladder cancer (difference in percentage 2.8%, 95% CI: -0.2%-5.8%), but not for kidney cancer (difference -0.6%, 95% CI: -3.2%-2.1%).CONCLUSIONS:The fourth BCoC BiP campaign appears to have been effective in increasing bladder cancer symptom awareness and GP attendances, although long-term impacts are unclear.

OBJECTIVE:A regional 'Be Clear on Cancer' (BCoC) campaign developed by Public Health England aimed to promote public awareness of key abdominal cancer symptoms in people aged 50 years and over.METHODS:Data were analysed for metrics at different stages in the patient care pathway including public awareness, GP attendance and referrals, to cancer diagnosis.RESULTS:There was significantly higher recognition of the BCoC abdominal campaign in the campaign region compared to the control area (Post Campaign/Control, n = 401/406; 35% vs. 24%, p < 0.05). The campaign significantly improved knowledge of 'bloating' as a symptom (p = 0.03) compared to pre-campaign levels. GP attendances for abdominal symptoms increased significantly by 5.8% (p = 0. 03), although the actual increase per practice was small (average 16.8 visits per week in 2016 to 17.7 in 2017). Urgent GP referrals for suspected abdominal cancer increased by 7.6%, compared to a non-significant change (0.05%) in the control area. For specific abdominal cancers, the number diagnosed were similar to or higher than the median in the campaign area but not in the control area in people aged 50 and over: colorectal (additional n = 61 cancers), pancreatic (additional n = 102) and stomach cancers (additional n = 17).CONCLUSIONS:This campaign had a modest impact on public awareness of abdominal cancer symptoms, GP attendances and cancers diagnosed.

The Be Clear on Cancer (BCoC) campaigns have run in England since 2010. They aim to raise awareness of possible cancer symptoms, encouraging people to consult a general practice with these symptoms. Our study provides an overview of the impact of 11 national campaigns, for bowel, lung, bladder and kidney, breast and oesophago-gastric cancers. We synthesised existing results for each campaign covering seven clinical metrics across the patient pathway from primary care attendances to one-year net survival. For each metric, "before" and "after" periods were compared to assess change potentially related to the campaign. Results show that primary care attendances for campaign-related symptoms increased for 9 of 10 campaigns and relevant urgent referrals for suspected cancer increased above general trends for 9 of 11 campaigns. Diagnostic tests increased for 6 of 11 campaigns. For 7 of 11 campaigns, there were increases in cancer diagnoses resulting from an urgent referral for suspected cancer. There were sustained periods where more cancers were diagnosed than expected for 8 of 10 campaigns, with higher than expected proportions diagnosed at an early stage for sustained periods for 4 of 10 campaigns. There was no impact on survival. In summary, there is evidence that the BCoC campaigns impact help-seeking by patients and referral patterns by general practitioners, with some impact on diagnosis (incidence and stage). There was no clear evidence of impact on survival.

ABSTRACT Background Emergency diagnosis of cancer is associated with poorer short-term survival and may reflect delayed help-seeking. Optimal targeting of interventions to raise awareness of cancer symptoms is therefore needed. Methods We examined the risk of emergency presentation of lung and colorectal cancer (diagnosed in 2016 in England). By cancer site, we used logistic regression (outcome emergency/non-emergency presentation) adjusting for patient-level variables (age, sex, deprivation and ethnicity) with/without adjustment for geodemographic segmentation (Mosaic) group. Results Analysis included 36 194 and 32 984 patients with lung and colorectal cancer. Greater levels of deprivation were strongly associated with greater odds of emergency presentation, even after adjustment for Mosaic group, which nonetheless attenuated associations (odds ratio [OR] most/least deprived group = 1.67 adjusted [model excluding Mosaic], 1.28 adjusted [model including Mosaic], P < 0.001 for both, for colorectal; respective OR values of 1.42 and 1.18 for lung, P < 0.001 for both). Similar findings were observed for increasing age. There was large variation in risk of emergency presentation between Mosaic groups (crude OR for highest/lowest risk group = 2.30, adjusted OR = 1.89, for colorectal; respective values of 1.59 and1.66 for lung). Conclusion Variation in risk of emergency presentation in cancer patients can be explained by geodemography, additional to deprivation group and age. The findings support proof of concept for public health interventions targeting all the examined attributes, including geodemography.

Background A two-phase ‘respiratory symptoms’ mass media campaign was conducted in 2016 and 2017 in England raising awareness of cough and worsening shortness of breath as symptoms warranting a general practitioner (GP) visit. Method A prospectively planned pre–post evaluation was done using routinely collected data on 15 metrics, including GP attendance, GP referral, emergency presentations, cancers diagnosed (five metrics), cancer stage, investigations (two metrics), outpatient attendances, inpatient admissions, major lung resections and 1-year survival. The primary analysis compared 2015 with 2017. Trends in metrics over the whole period were also considered. The effects of the campaign on awareness of lung cancer symptoms were evaluated using bespoke surveys. Results There were small favourable statistically significant and clinically important changes over 2 years in 11 of the 15 metrics measured, including a 2.11% (95% confidence interval 1.02–3.20, p < 0.001) improvement in the percentage of lung cancers diagnosed at an early stage. However, these changes were not accompanied by increases in GP attendances. Furthermore, the time trends showed a gradual change in the metrics rather than steep changes occurring during or after the campaigns. Conclusion There were small positive changes in most metrics relating to lung cancer diagnosis after this campaign. However, the pattern over time challenges whether the improvements are wholly attributable to the campaign. Given the importance of education on cancer in its own right, raising awareness of symptoms should remain important. However further research is needed to maximise the effect on health outcomes.

Background There is considerable variation between GP practices in England in their use of urgent referral pathways for suspected cancer. Aim To determine the association between practice use of urgent referral and cancer stage at diagnosis and cancer patient mortality, for all cancers and the most common types of cancer (colorectal, lung, breast, and prostate). Design and setting National cohort study of 1.4 million patients diagnosed with cancer in England between 2011 and 2015. Method The cohort was stratified according to quintiles of urgent referral metrics. Cox proportional hazards regression was used to quantify risk of death, and logistic regression to calculate odds of late-stage (III/IV) versus early-stage (I/II) cancers in relation to referral quintiles and cancer type. Results Cancer patients from the highest referring practices had a lower hazard of death (hazard ratio [HR] = 0.96; 95% confidence interval [CI] = 0.95 to 0.97), with similar patterns for individual cancers: colorectal (HR = 0.95; CI = 0.93 to 0.97); lung (HR = 0.95; CI = 0.94 to 0.97); breast (HR = 0.96; CI = 0.93 to 0.99); and prostate (HR = 0.88; CI = 0.85 to 0.91). Similarly, for cancer patients from these practices, there were lower odds of late-stage diagnosis for individual cancer types, except for colorectal cancer. Conclusion Higher practice use of referrals for suspected cancer is associated with lower mortality for the four most common types of cancer. A significant proportion of the observed mortality reduction is likely due to earlier stage at diagnosis, except for colorectal cancer. This adds to evidence supporting the lowering of referral thresholds and consequent increased use of urgent referral for suspected cancer.

Di Girolamo, C; Walters, S; Gildea, C; Benitez Majano, S; Coleman, MP; Rachet, B; Morris, M; (2018) Which patients are not included in the English Cancer Waiting Times monitoring dataset, 2009-2013? Implications for use of the data in research. British journal of cancer, 118 (5). pp. 733-737. ISSN 0007-0920 DOI: https://doi.org/10.1038/bjc.2017.452 Downloaded from: http://researchonline.lshtm.ac.uk/id/eprint/4646176/ DOI: https://doi.org/10.1038/bjc.2017.452

BackgroundThe ‘Be Clear on Cancer’ awareness campaigns aim to raise awareness of cancer symptoms and encourage people with these symptoms to ‘tell their doctor’. GP attendances are therefore a key metric for evaluating the impact of a campaign. We considered the impact on GP attendances of several campaigns since 2013, including the 2015 national oesophagogastric cancer campaign, the 2016 national respiratory symptoms campaign and campaigns for lung cancer, ‘blood in pee’, and breast cancer in women aged >70 years.AimTo consider the impact on GP attendances of several campaigns since 2013, including the 2015 national oesophagogastric cancer campaign, the 2016 national respiratory symptoms campaign and others.MethodData on the weekly numbers of GP attendances and practices were extracted from The Health Improvement Network (THIN) database. For patients reporting campaign symptoms or a control symptom (back pain), the average number of GP attendances per practice per week was calculated. Analysis considered the trend in GP attendances, calculated the change in attendances for the campaign period compared to the same period in an earlier year, and assessed this change using a χ2 test.ResultsThe 2015 oesophagogastric cancer campaign, resulted in a statistically significant 29% increase (P<0.001) in the number of attendances for symptoms of dyspepsia and dysphagia, compared with the same period in 2013. Conversely, there was no significant change in attendances for back pain. Results for other campaigns will be presented.ConclusionThe THIN database has provided primary care data which can be used to assess the impact of awareness campaigns on primary care activity. Results demonstrate increases in GP attendances following some of the campaigns, suggesting that some patients responded to the campaigns’ call to action.

BackgroundThe Cancer Services profiles report indicators of cancer diagnostic activity for all English general practices. A recent study reported that several indicators were dominated by chance, with some practice-level variation explained by the practice’s age-sex profile.AimTo assess the variation explained by patient-level case-mix and whether the practice age-sex profile adequately adjusts for this.MethodFive indicators from Cancer Waiting Times (2016/17, 6050 practices) or Routes to Diagnosis (2015, 6355 practices) data were considered: Two Week Wait (TWW) conversion and detection rates, and emergency-, referred- and other-diagnosis proportions. Mixed-effect logistic regression adjusted for patient-level case-mix, using national cancer registration data on age, sex, deprivation, referral/cancer-type and, where possible, ethnicity and stage at diagnosis, with and without practice-level age-sex profile.ResultsChance explained 60–85% of practice-level variation, with the combination of chance and patient-level case-mix explaining 75% (TWW conversion rate) to 89% (emergency diagnosis proportion). For TWW conversion rate, there was considerable overlap in the variance explained by practice- and patient-level factors. For the other indicators, practice- or patient-level factors were largely independent.ConclusionChance is not synonymous with case-mix and is the dominant source of variation in single-year practice indicators. Therefore, we recommend the continued aggregation of data over multiple years. For most studied indicators, adjustment for the age-sex profile of the whole practice population is not a substitute for case-mix of individual cancer patients and so should not be used. Patient-level case-mix adjustment leads to a modest reordering of practices and so may not be a priority.

Abstract Background Large variation in measures of diagnostic activity has been described previously between English general practices, but related predictors remain understudied. Objective To examine associations between general practice population and characteristics, with the use of urgent referrals for suspected cancer, and use of endoscopy. Methods Cross-sectional observational study of English general practices. We examined practice-level use (/1000 patients/year) of urgent referrals for suspected cancer, gastroscopy, flexible sigmoidoscopy and colonoscopy. We used mixed-effects Poisson regression to examine associations with the sociodemographic profile of practice populations and other practice attributes, including the average age, sex and country of qualification of practice doctors. Results The sociodemographic characteristics of registered patients explained much of the between-practice variance in use of urgent referrals (32%) and endoscopic investigations (18–25%), all being higher in practices with older and more socioeconomically deprived patients. Practice-level attributes explained a substantial amount of between-practice variance in urgent referral (19%) but little of the variance in endoscopy (3%-4%). Adjusted urgent referral rates were higher in training practices and those with younger GPs. Practices with mean doctor ages of 41 and 57 years (at the 10th/90th centiles of the national distribution) would have urgent referral rates of 24.1 and 19.1/1000 registered patients, P < 0.001. Conclusion Most between-practice variation in use of urgent referrals and endoscopies seems to reflect health need. Some practice characteristics, such as the mean age of GPs, are associated with appreciable variation in use of urgent referrals, though these associations do not seem strong enough to justify targeted interventions.

Background: Cancer waiting time targets are routinely monitored in England, but the Cancer Waiting Times monitoring dataset (CWT) does not include all eligible patients, introducing scope for bias. Methods: Data from adults diagnosed in England (2009- 2013) with colorectal, lung, or ovarian cancer were linked from CWT to cancer registry, mortality, and Hospital Episode Statistics data. We present demographic characteristics and net survival for patients who were and were not included in CWT. Results: A CWT record was found for 82% of colorectal, 76% of lung, and 77% of ovarian cancer patients. Patients not recorded in CWT were more likely to be in the youngest or oldest age groups, have more comorbidities, have been diagnosed through emergency presentation, have late or missing stage, and have much poorer survival. Conclusions: Researchers and policy- makers should be aware of the limitations in the completeness and representativeness of CWT, and draw conclusions with appropriate caution.

A retrospective population-based observational study using cancer registration data of women diagnosed with invasive cervical cancer between 2006 and 2010, in England, was carried out to explore how different morphological subtypes affect survival rates. Age-standardised net survival rates by morphological subtype are presented alongside with excess mortality modelling accounting for the impact of demographic, diagnostic and tumour factors. The three main morphological subtypes (squamous cell carcinoma (SCC), adenocarcinoma and adenosquamous carcinoma) have similar one-year net survival rates of approximately 85%. After adjusting for other important determinants of survival, there were no differences at five-years amongst the three main morphological subtypes, with unadjusted survival rates of 55-65%. As expected, women presenting with neuroendocrine tumours had a much poorer outcome than other epithelial cervical malignancies, with 1-year survival of up to 55%, five-year survival of 34% and excess mortality rates compared to SCC varying between 1.9 and 5.9.Impact StatementWhat is already known on this subject: This is the first study on survival by cervical cancer morphological subtype using national cancer data.What the results of this study add: This study uses excess mortality modelling to investigate the effects of the morphological subtypes whilst adjusting the other factors that affect cervical cancer survival such as stage, age and grade.What the implications are of these findings for clinical practice and/or further research: It is known that cervical neuroendocrine tumours have a poor prognosis and this is confirmed by this study. Squamous cell carcinomas (SCC), adenocarcinomas (AC) and adenosquamous carcinomas (ASC) have the highest net survival and when accounting for other factors there are no differences amongst these morphological subtypes in terms of survival.

OBJECTIVES:Recent public reporting initiatives in England highlight general practice variation in indicators of diagnostic activity related to cancer. We aimed to quantify the size and sources of variation and the reliability of practice-level estimates of such indicators, to better inform how this information is interpreted and used for quality improvement purposes. DESIGN:Ecological cross-sectional study. SETTING:English primary care. PARTICIPANTS:All general practices in England with at least 1000 patients. MAIN OUTCOME MEASURES:Sixteen diagnostic activity indicators from the Cancer Services Public Health Profiles. RESULTS:Mixed-effects logistic and Poisson regression showed that substantial proportions of the observed variance in practice scores reflected chance, variably so for different indicators (between 7% and 85%). However, after accounting for the role of chance, there remained substantial variation between practices (typically up to twofold variation between the 75th and 25th centiles of practice scores, and up to fourfold variation between the 90th and 10th centiles). The age and sex profile of practice populations explained some of this variation, by different amounts across indicators. Generally, the reliability of diagnostic process indicators relating to broader populations of patients most of whom do not have cancer (eg, rate of endoscopic investigations, or urgent referrals for suspected cancer (also known as 'two week wait referrals')) was high (≥0.80) or very high (≥0.90). In contrast, the reliability of diagnostic outcome indicators relating to incident cancer cases (eg, per cent of all cancer cases detected after an emergency presentation) ranged from 0.24 to 0.54, which is well below recommended thresholds (≥0.70). CONCLUSIONS:Use of indicators of diagnostic activity in individual general practices should principally focus on process indicators which have adequate or high reliability and not outcome indicators which are unreliable at practice level.