Diagnostics: a major priority for the NHS.

Diagnostic capacity in the NHS in England was much lower than that in many other developed countries before the COVID-19 pandemic. The relative lack of diagnostic equipment and workforce is now hampering recovery from the pandemic. In response to this, a major programme of work is now underway to improve access to a wide range of diagnostic tests. Establishment of community diagnostic centres is a key component of this programme.

Health information technology and digital innovation for national learning health and care systems.

Health information technology can support the development of national learning health and care systems, which can be defined as health and care systems that continuously use data-enabled infrastructure to support policy and planning, public health, and personalisation of care. The COVID-19 pandemic has offered an opportunity to assess how well equipped the UK is to leverage health information technology and apply the principles of a national learning health and care system in response to a major public health shock. With the experience acquired during the pandemic, each country within the UK should now re-evaluate their digital health and care strategies. After leaving the EU, UK countries now need to decide to what extent they wish to engage with European efforts to promote interoperability between electronic health records. Major priorities for strengthening health information technology in the UK include achieving the optimal balance between top-down and bottom-up implementation, improving usability and interoperability, developing capacity for handling, processing, and analysing data, addressing privacy and security concerns, and encouraging digital inclusivity. Current and future opportunities include integrating electronic health records across health and care providers, investing in health data science research, generating real-world data, developing artificial intelligence and robotics, and facilitating public-private partnerships. Many ethical challenges and unintended consequences of implementation of health information technology exist. To address these, there is a need to develop regulatory frameworks for the development, management, and procurement of artificial intelligence and health information technology systems, create public-private partnerships, and ethically and safely apply artificial intelligence in the National Health Service.

Impact of the COVID-19 pandemic on the detection and management of colorectal cancer in England: a population-based study.

BACKGROUND: There are concerns that the COVID-19 pandemic has had a negative effect on cancer care but there is little direct evidence to quantify any effect. This study aims to investigate the impact of the COVID-19 pandemic on the detection and management of colorectal cancer in England. METHODS: Data were extracted from four population-based datasets spanning NHS England (the National Cancer Cancer Waiting Time Monitoring, Monthly Diagnostic, Secondary Uses Service Admitted Patient Care and the National Radiotherapy datasets) for all referrals, colonoscopies, surgical procedures, and courses of rectal radiotherapy from Jan 1, 2019, to Oct 31, 2020, related to colorectal cancer in England. Differences in patterns of care were investigated between 2019 and 2020. Percentage reductions in monthly numbers and proportions were calculated. FINDINGS: As compared to the monthly average in 2019, in April, 2020, there was a 63% (95% CI 53-71) reduction (from 36 274 to 13 440) in the monthly number of 2-week referrals for suspected cancer and a 92% (95% CI 89-95) reduction in the number of colonoscopies (from 46 441 to 3484). Numbers had just recovered by October, 2020. This resulted in a 22% (95% CI 8-34) relative reduction in the number of cases referred for treatment (from a monthly average of 2781 in 2019 to 2158 referrals in April, 2020). By October, 2020, the monthly rate had returned to 2019 levels but did not exceed it, suggesting that, from April to October, 2020, over 3500 fewer people had been diagnosed and treated for colorectal cancer in England than would have been expected. There was also a 31% (95% CI 19-42) relative reduction in the numbers receiving surgery in April, 2020, and a lower proportion of laparoscopic and a greater proportion of stoma-forming procedures, relative to the monthly average in 2019. By October, 2020, laparoscopic surgery and stoma rates were similar to 2019 levels. For rectal cancer, there was a 44% (95% CI 17-76) relative increase in the use of neoadjuvant radiotherapy in April, 2020, relative to the monthly average in 2019, due to greater use of short-course regimens. Although in June, 2020, there was a drop in the use of short-course regimens, rates remained above 2019 levels until October, 2020. INTERPRETATION: The COVID-19 pandemic has led to a sustained reduction in the number of people referred, diagnosed, and treated for colorectal cancer. By October, 2020, achievement of care pathway targets had returned to 2019 levels, albeit with smaller volumes of patients and with modifications to usual practice. As pressure grows in the NHS due to the second wave of COVID-19, urgent action is needed to address the growing burden of undetected and untreated colorectal cancer in England. FUNDING: Cancer Research UK, the Medical Research Council, Public Health England, Health Data Research UK, NHS Digital, and the National Institute for Health Research Oxford Biomedical Research Centre.

Functional Outcomes and Health-Related Quality of Life After Curative Treatment for Rectal Cancer: A Population-Level Study in England.

PURPOSE: There is a growing population of cancer survivors at risk of treatment-related morbidity. This study investigated how potentially curative rectal cancer treatment influences subsequent function and health-related quality of life using data from a large-scale survey of patient-reported outcomes. METHODS AND MATERIALS: All individuals 12 to 36 months after receiving a diagnosis of colorectal cancer in England were sent a survey in January 2013. The survey responses were linked with cancer registration, hospital admissions, and radiation therapy data through the National Cancer Registration and Analysis Service. Outcome measures were cancer specific (Functional Assessment of Cancer Therapy and Social Difficulties Inventory items related to fecal incontinence, urinary incontinence, and sexual difficulties) and generic (EuroQol EQ-5D). RESULTS: Surveys were returned by 6713 (64.2%) of 10,452 patients with rectal cancer. Of these, 3998 patients were in remission after a major resection and formed the final analysis sample. Compared with those who had surgery alone, patients who received preoperative radiation therapy had higher odds of reporting poor bowel control (43.6% vs 33.0%; odds ratio [OR] = 1.55; 95% confidence interval [CI], 1.26-1.91), severe urinary leakage (7.2% vs 3.5%; OR = 1.69; 95% CI, 1.18-2.43), and severe sexual difficulties (34.4% vs 18.3%; OR = 1.73; 95% CI, 1.43-2.11). Patients who received long-course chemoradiotherapy reported significantly better bowel control than those who had short-course radiation therapy, with no difference for other outcomes. Respondents with a stoma present reported significantly higher levels of severe sexual difficulties and worse health-related quality of life than those who had never had a stoma or had undergone stoma reversal. CONCLUSIONS: This study demonstrated the feasibility of a large-scale assessment of patient-reported outcomes and provided "real-world" data regarding the effect of rectal cancer treatment. The results show that patients who receive preoperative radiation therapy reported poorer outcomes, particularly for bowel and sexual function, and highlighted the negative impact of a stoma. We hope that our experience will encourage researchers to perform similar studies in other healthcare systems.

Health-related quality of life after treatment for bladder cancer in England.

BACKGROUND: Little is known about quality of life after bladder cancer treatment. This common cancer is managed using treatments that can affect urinary, sexual and bowel function. METHODS: To understand quality of life and inform future care, the Department of Health (England) surveyed adults surviving bladder cancer 1-5 years after diagnosis. Questions related to disease status, co-existing conditions, generic health (EQ-5D), cancer-generic (Social Difficulties Inventory) and cancer-specific outcomes (Functional Assessment of Cancer Therapy-Bladder). RESULTS: In total, 673 (54%) patients responded; including 500 (74%) men and 539 (80%) with co-existing conditions. Most respondents received endoscopic treatment (60%), while 92 (14%) and 99 (15%) received radical cystectomy or radiotherapy, respectively. Questionnaire completion rates varied (51-97%). Treatment groups reported ≥1 problem using EQ-5D generic domains (59-74%). Usual activities was the most common concern. Urinary frequency was common after endoscopy (34-37%) and radiotherapy (44-50%). Certain populations were more likely to report generic, cancer-generic and cancer-specific problems; notably those with co-existing long-term conditions and those treated with radiotherapy. CONCLUSION: The study demonstrates the importance of assessing patient-reported outcomes in this population. There is a need for larger, more in-depth studies to fully understand the challenges patients with bladder cancer face.

Identifying Social Distress: A Cross-Sectional Survey of Social Outcomes 12 to 36 Months After Colorectal Cancer Diagnosis.

PURPOSE: To establish the prevalence and determinants of poor social outcomes after a diagnosis of colorectal cancer (CRC). PATIENTS AND METHODS: All 12- to 36-month survivors of CRC (International Classification of Diseases [10th revision] codes C18 to C20) diagnosed in 2010 or 2011 and treated in the English National Health Service were identified and sent a questionnaire from their treating cancer hospital. This included the Social Difficulties Inventory, a 16-item scale of social distress (SD) comprising everyday living, money matters, and self and others subscales, plus five single items. Sociodemographic and clinical data were also collected. Analyses using descriptive statistics, χ(2) tests, and logistic regression models were conducted. RESULTS: Response rate was 63.3% (21,802 of 34,467). Of the 21,802 participants, 17,830 (81.8%) completed all SD items; 2,688 (15.1%) of these 17,830 respondents were classified as experiencing SD (everyday living, 19.5%; money matters, 15.6%; self and others, 18.1%). Multivariable analysis demonstrated having ≥ three long-term conditions was the strongest predictor of SD (odds ratio [OR], 6.64; 95% CI, 5.67 to 7.77 compared with no long-term conditions), followed by unemployment (OR, 5.11; 95% CI, 4.21 to 6.20 compared with being employed), having recurrent or nontreatable disease (OR, 2.75; 95% CI, 2.49 to 3.04 compared with being in remission), and having a stoma (OR, 2.10; 95% CI, 1.86 to 2.36 compared with no stoma). Additional predictors of SD were young age (< 55 years), living in a more deprived area, nonwhite ethnicity, having advanced-stage disease, having undergone radiotherapy, and being a carer. CONCLUSION: Although it is reassuring a majority do not experience social difficulties, a minority reported significant SD 12 to 36 months after diagnosis of CRC. The identified clinical and social risk factors are easy to establish and should be used to target support.

Health-related quality of life after colorectal cancer in England: a patient-reported outcomes study of individuals 12 to 36 months after diagnosis.

PURPOSE: This population-level study was conducted to define the health-related quality of life (HRQL) of individuals living with and beyond colorectal cancer (CRC) and to identify factors associated with poor health outcomes. PATIENTS AND METHODS: All individuals diagnosed with CRC in England in 2010 and 2011 who were alive 12 to 36 months after diagnosis were sent a questionnaire. This included questions related to treatment, disease status, other long-term conditions (LTCs), generic HRQL (EuroQol-5D), and cancer-specific outcomes (Functional Assessment of Cancer Therapy and Social Difficulties Inventory items). RESULTS: The response rate was 63.3% (21,802 of 34,467 patients). One or more generic health problems were reported by 65% of respondents, with 10% of patients reporting problems in all five domains. The reporting of problems was higher than in the general population and was most marked in those age less than 55 years. Certain subgroups reported a higher number of problems, notably those with one or more other LTCs, those with active or recurrent disease, those with a stoma, and those at the extremes of the age range (< 55 and > 85 years). Of respondents without a stoma, 16.3% reported no bowel control. Reversal of a stoma resulted in fewer severe bowel problems but more moderate problems than those who had never had a stoma. A quarter of rectal cancer respondents (25.1%) reported difficulties with sexual matters (compared with 11.2% of colon cancer respondents). CONCLUSION: This study demonstrates the success of a national patient-reported outcomes survey. The results have the potential to support system-wide improvement in health outcomes through the identification of particular challenges faced by individuals after treatment for CRC.

Inspection as a driver for quality improvement.

Following publication in 2013 of the report by Robert Francis QC into care at the Mid Staffordshire Foundation Trust, the Care Quality Commission (CQC) has introduced a new and radically different approach to hospital inspection. This involves much larger teams (typically 30 or more people) including clinicians, experts by experience and CQC staff. Eight core services are assessed against five key questions (domains): Are services safe? Effective? Caring? Responsive to patients' needs? Well led? Each domain of each core service is rated on a four point scale: Outstanding, Good, Requires Improvement or Inadequate. To date 65 (40%) of the 160 acute trusts in England have been inspected, the aim being to inspect all trusts by December 2015. The most important single finding is the huge variation in quality of care that the inspection teams have identified within the NHS. Informal feedback suggests that the new approach to inspection represents a significant improvement on previous CQC inspections, though further improvement is imperative.

The International Cancer Benchmarking Partnership: an international collaboration to inform cancer policy in Australia, Canada, Denmark, Norway, Sweden and the United Kingdom.

The International Cancer Benchmarking Partnership (ICBP) was initiated by the Department of Health in England to study international variation in cancer survival, and to inform policy to improve cancer survival. It is a research collaboration between twelve jurisdictions in six countries: Australia (New South Wales, Victoria), Canada (Alberta, British Columbia, Manitoba, Ontario), Denmark, Norway, Sweden, and the United Kingdom (England, Northern Ireland, Wales). Leadership is provided by policymakers, with academics, clinicians and cancer registries forming an international network to conduct the research. The project currently has five modules examining: (1) cancer survival, (2) population awareness and beliefs about cancer, (3) attitudes, behaviours and systems in primary care, (4) delays in diagnosis and treatment, and their causes, and (5) treatment, co-morbidities and other factors. These modules employ a range of methodologies including epidemiological and statistical analyses, surveys and clinical record audit. The first publications have already been used to inform and develop cancer policies in participating countries, and a further series of publications is under way. The module design, governance structure, funding arrangements and management approach to the partnership provide a case study in conducting international comparisons of health systems that are both academically and clinically robust and of immediate relevance to policymakers.

Patient-reported outcomes of cancer survivors in England 1-5 years after diagnosis: a cross-sectional survey.

OBJECTIVES: To determine the feasibility of collecting population-based patient-reported outcome measures (PROMs) in assessing quality of life (QoL) to inform the development of a national PROMs programme for cancer and to begin to describe outcomes in a UK cohort of survivors. DESIGN: Cross-sectional postal survey of cancer survivors using a population-based sampling approach. SETTING: English National Health Service. PARTICIPANTS: 4992 breast, colorectal, prostate and non-Hodgkin's lymphoma (NHL) survivors 1-5 years from diagnosis. PRIMARY AND SECONDARY OUTCOME MEASURES: Implementation issues, response rates, cancer-specific morbidities utilising items including the EQ5D, tumour-specific subscales of the Functional Assessment of Cancer Therapy and Social Difficulties Inventory. RESULTS: 3300 (66%) survivors returned completed questionnaires. The majority aged 85+ years did not respond and the response rates were lower for those from more deprived area. Response rates did not differ by gender, time since diagnosis or cancer type. The presence of one or more long-term conditions was associated with significantly lower QoL scores. Individuals from most deprived areas reported lower QoL scores and poorer outcomes on other measures, as did those self-reporting recurrent disease or uncertainty about disease status. QoL scores were comparable at all time points for all cancers except NHL. QoL scores were lower than those from the general population in Health Survey for England (2008) and General Practice Patient Survey (2012). 47% of patients reported fear of recurrence, while 20% reported moderate or severe difficulties with mobility or usual activities. Bowel and urinary problems were common among colorectal and prostate patients. Poor bowel and bladder control were significantly associated with lower QoL. CONCLUSIONS: This method of assessing QoL of cancer survivors is feasible and acceptable to most survivors. Routine collection of national population-based PROMs will enable the identification of, and the support for, the specific needs of survivors while allowing for comparison of outcome by service provider.

Cancer recording and mortality in the General Practice Research Database and linked cancer registries.

PURPOSE: Large electronic datasets are increasingly being used to evaluate healthcare delivery. The aim of this study was to compare information held by cancer registries with that of the General Practice Research Database (GPRD). METHODS: A convenience sample of 101 020 patients aged 40+ years drawn from GPRD formed the primary data source. This cohort was derived from a larger sample originally established for a cohort study of diabetes. GPRD records were linked with those from cancer registries in the National Cancer Data Repository (NCDR). Concordance between the two datasets was then evaluated. For cases recorded only on one dataset, validation was sought from other datasets (Hospital Episode Statistics and death registration) and by detailed analysis of a subset of GPRD records. RESULTS: A total of 5797 cancers (excluding non-melanomatous skin cancer) were recorded on GPRD. Of these cases, 4830 were also recorded on NCDR (concordance rate of 83.3%). Of the 976 cases recorded on GPRD but not on NCDR, 528 were present also in the hospital records or death certificates. Of the 341 cases recorded on NCDR but not on GPRD, 307 were recorded in these other two datasets. Rates of concordance varied by cancer type. Cancer registries recorded larger numbers of patients with lung, colorectal, and pancreatic cancers, whereas GPRD recorded more haematological cancers and melanomas. As expected, GPRD recorded significantly more non-melanomatous skin cancer. Concordance decreased with increasing age. CONCLUSION: Although concordance levels were reasonably high, the findings from this study can be used to direct efforts for better recording in both datasets.

Variation in use of the 2-week referral pathway for suspected cancer: a cross-sectional analysis.

BACKGROUND: A 2-Week Wait (2WW) referral pathway for earlier diagnosis of suspected cancer was introduced in England in 2000. Nevertheless, a significant proportion of patients with cancer are diagnosed by other routes (detection rate), only a small proportion of 2WW referrals have cancer (conversion rate) and there is considerable between-practice variation. AIM: This study examined use by practices of the 2WW referral in relation to all cancer diagnoses. DESIGN AND SETTING: A cross-sectional analysis of data extracted from the Cancer Waiting Times Database for all 2WW referrals in 2009 and for all patients receiving a first definitive treatment in the same year. METHOD: The age standardised referral ratio, conversion rate, and detection rate were calculated for all practices in England and the correlation coefficient for each pair of measures. The median detection rate was calculated for each decile of practices ranked by conversion rate and vice versa, performing nonparametric tests for trend in each case. RESULTS: Data for 8049 practices, 865 494 referrals, and 224 984 cancers were analysed. There were significant correlations between referral ratio and conversion rate (inverse) and detection rate (direct). There was also a direct correlation between conversion and detection rates. There was a significant trend in conversion rate for deciles of detection rate, and vice versa, with a marked difference between the lowest and higher deciles. CONCLUSION: There is a consistent relationship between 2WW referral conversion rate and detection rate that can be interpreted as representing quality of clinical practice. The 2WW referral rate should not be a measure of quality of clinical care.

Improving end-of-life care for people with dementia.

One in three adults over the age of 60 years will die with dementia. Most will have complex physical and psychological needs. Despite this, many people with dementia receive poor-quality end-of-life care. Recent government strategies have highlighted the importance of improved coordination and provision of services.