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Original research
Clinical nurse specialists and survival in patients with cancer: the UK National Cancer Experience Survey
  1. Saleh A Alessy1,2,
  2. Elizabeth Davies2,
  3. Janette Rawlinson3,
  4. Matthew Baker3 and
  5. Margreet Lüchtenborg2,4
  1. 1 Public Health Department, College of Health Sciences, Saudi Electronic University, Riyadh, Saudi Arabia
  2. 2 Centre for Cancer, Society & Public Health, Comprehensive Cancer Centre, King's College London, London, UK
  3. 3 Consumer Forum, National Cancer Research Institute, London, UK
  4. 4 National Cancer Registration and Analysis Service, NHS Digital, Leeds, UK
  1. Correspondence to Dr Saleh A Alessy, Public Health Department, College of Health Sciences, Saudi Electronic University, Abu Bakr Al Siddiq Street, Riyadh 11673, Saudi Arabia; s.alessy{at}seu.edu.sa

Abstract

Objective To examine whether having a better care experience with a clinical nurse specialist (CNS) is associated with better overall survival of patients with cancer in England.

Methods We identified 99 371 patients with colorectal, lung, breast and prostate cancer who reported their care experience with CNS from the National Cancer Patient Experience Survey (2010–2014) and English cancer registration linked dataset. We categorised patients’ experiences into three groups (excellent, non-excellent and no CNS name was given), across three aspects of CNS care: the ease of contacting their CNS, feeling that a CNS had listened to them and the degree to which explanations given by a CNS were understandable. We used univariable and multivariable Cox proportional hazards regression analyses to estimate HRs with 95% CIs by patient experience for each cancer adjusting for patients’ sociodemographic and disease stage at diagnosis.

Results Among the three compared groups, patients who reported not being given a CNS name had the lowest survival. In the adjusted Cox regression analysis, the results show that among those who reported not being given a CNS name, the highest risk of death was in those with colorectal, breast and prostate cancers only (colorectal HR: 1.40; 95% CI: 1.32 to 1.84; breast HR: 1.34; 95% CI: 1.25 to 1.44; prostate HR: 1.09; 95% CI: 0.99 to 1.13). However, this association seemed reversed among patients with lung cancer, although attenuated when accounting for potential confounders.

Conclusion These findings provide new evidence of the vital contribution CNS may make to cancer survival and suggest CNS input and support should be available to all patients after the diagnosis.

  • Cancer
  • Communication
  • Clinical assessment
  • Service evaluation
  • Survivorship

Data availability statement

Data may be obtained from a third party and are not publicly available. The data that support the findings of this study are available from NHS Digital but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. The authors do not own these data, and therefore are not permitted to share or provide these data other than in scientific communication format.

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjspcare-2021-003445

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    Key messages

    What is already known on this topic

    • Improving patients’ experiences of cancer care is a high priority in the national cancer strategy in England.

    • The role of clinical nurse specialists (CNS) in improving experiences of patients with cancer is thought to be a positive one but has not yet been extensively researched.

    What this study adds

    • In our population-based study, we used data collected mainly for the purpose of measuring experiences of patients with cancer at a national level.

    • This study shows for the first time how being directed to a specific CNS is subsequently associated with better care experiences at an individual patient level and subsequent survival.

    How this study might affect research, practice or policy

    • If this association is causal, this is new evidence of the vital contribution CNS may make to cancer survival.

    • Future research should focus on determining what aspects of patients’ experience with CNS play the most vital role in patients’ assessment, treatment and their subsequent survival.

    Introduction

    Cancer survival in the UK is low compared with several high-income countries with universal healthcare systems.1 Variabilities in underlying health systems, cancer policy and clinical practice are known to be important drivers of cancer survival.1 Patient experience is widely considered as a central pillar of cancer care quality and has also been shown to be associated with patient safety, care effectiveness and health outcomes in many care settings, including cancer.2–6 Previous research in England and Europe has shown that hospital care quality and patients’ experiences vary in relation to inpatient nurse staffing and education, and improve with higher levels of each across many care settings.7–11

    Clinical nurse specialists (CNS) play a key role in coordinating cancer care, contributing to the cancer multidisciplinary team, as well as in providing information and emotional support for individual patients during face-to-face and telephone contact.12–16 Previous reports have shown variation in access to CNS by geography and by tumour site.17 18 The National Cancer Patient Experience Survey (CPES) asks patients about a wide range of care aspects including their experiences with CNS.19 CNS care has been shown to play a role in patients’ receipt of anticancer therapy and in improving experiences of patients with cancer with other care aspects such as care coordination, involvement in treatment decisions and overall care experiences.18 20 An important question is whether variation in care experiences of patients with cancer with CNS is also associated with their survival.

    The linked CPES and English cancer registration data (CPES-National Cancer Registration and Analysis Service (NCRAS)) have enabled studies of the potential association between patients’ experiences and cancer care outcomes.21 Using the CPES-NCRAS linked dataset and focusing on the four most common cancers (colorectal, lung, breast and prostate cancers), this study aimed to examine whether having a better care experience of CNS care is associated with better overall survival of patients with cancer in England.

    Methodology

    Study design and participants

    In this population-based study, we extracted data on all individuals with a primary, invasive tumour of the colorectum, lung, female breast and prostate from the CPES-NCRAS linked dataset focusing on patients who responded to the National CPES between 2010 and 2014. The survey sampling frame includes all adult patients with a primary diagnosis of cancer who have been discharged from a National Health Service hospital during a 3-month period in each year. Patients are invited to complete the survey by post, with two reminders being sent to non-responders. The response rate to the survey was stable (64%–68%) between 2010 and 2014. CPES contains around 70 questions covering many aspects of cancer care experience. Patients are asked in CPES to report their experiences on four aspects of CNS care. These are, as ordered in CPES: (1) being given a CNS name, (2) the ease of contacting their CNS, (3) feeling that a CNS had listened to them and (4) the degree to which explanations given by a CNS were understandable. Patients who reported not being given a CNS name were asked not to report their experiences in the subsequent three CNS experience questions in the survey. For the purposes of the analysis, we first identified the group of patients who were not given the name of a CNS. For patients who were given a CNS name and reported their experiences in the remaining three questions, we categorised their responses into two main categories: ‘excellent’ and ‘non-excellent’ experience in line with previous reports22–24 (table 1).

    View this table:
    Table 1

    CPES questions about patients’ experiences with clinical nurse specialists (CNS) categorised into excellent and non-excellent experience

    Procedures

    A total number of 114 898 records were extracted from the CPES-NCRAS dataset. Some patients were surveyed more than once throughout the different iterations of CPES during 2010–2014. Therefore, we took the first survey record for each patient and removed additional responses (n=6293). In addition, we excluded cases with a missing socioeconomic deprivation score for their area of residence (n=174), and patients with a registered date of death before treatment and/or diagnosis dates (n=1230). We also excluded patients who did not indicate whether they had been given a CNS name, and those who did not report their experiences for at least one of the CNS questions, including patients who reported ‘I do not know’ or ‘I did not ask questions’ (n=7825) (figure 1).

    Figure 1
    Figure 1

    Study population flow chart. CNS, clinical nurse specialist; CPES, Cancer Patient Experience Survey; NCRAS, National Cancer Registration and Analysis Service.

    Start of follow-up

    To eliminate the possibility of ‘immortal time’ bias, which occurs when a person-time is counted when that person is not at risk of the outcome of interest,25 we considered that in this study, those patients who completed the survey had, by definition, to be alive to receive, complete and return it. Ideally, we would have used the date at which patients completed their own survey. As this is not recorded, we moved the start of follow-up to the survey mail out date provided by Quality Health, that is, that patients were considered to be at risk of death from the survey mail out. We also calculated the ‘immortal time’ between the date of diagnosis and the point where the survival analysis started (survey mail out) in days to adjust for in the Cox proportional hazards modelling (figure 2). Patients who were still alive were censored on their vital status date in the cancer registration (updated between 5 and 10 February 2019).

    Figure 2
    Figure 2

    Time between date of cancer diagnosis and start of follow-up (CPES mail out) in the study population by cancer type. CPES, Cancer Patient Experience Survey.

    Patients’ information and data analysis

    Data on sex, age, geographical region of residence, deprivation of area of residence and the TNM Classification of Malignant Tumours (TNM) disease stage are available in the cancer registry dataset for all patients with cancer. For lung cancer, we also extracted additional stage information from the National Lung Cancer Audit data (n=2888).26 We used self-assigned ethnicity information from cancer registration data which is derived from the Hospital Episode Statistics (HES) data.26 Due to the limited numbers in each ethnic category, we collapsed the 16-group classification into two categories: all white background (ie, white British, Irish and other white background) and non-white.

    Socioeconomic deprivation is measured using the income domain of the Indices of Multiple Deprivation (IMD) on the lower super output level. Individual patients are assigned a score of 1 (affluent) through 5 (most deprived) based on their postcode of residence at diagnosis. We applied the closest match of each patient’s year of diagnosis to one of the four versions of IMD available in the cancer registry (2004, 2007, 2010, 2015). Route to diagnosis data is available for all cancer cases diagnosed in England since 2006 and is derived by linking HES data, Cancer Waiting Times data, cancer screening programmes data and cancer registration data.26 The categories used are emergency presentation, general practice referral, screening, 2-week referral and elective referral.

    We first tabulated the distribution of patient characteristics (age, sex, socioeconomic deprivation, ethnicity, geographical areas), tumour characteristics (disease stage at diagnosis) and route to diagnosis according to the reported experience with CNS: the ease of contacting their CNS, feeling that a CNS had listened to them and the degree to which explanations given by a CNS were understandable. χ² tests were obtained to test for differences between each CNS experience group according to age, sex, ethnicity, route to diagnosis and stage categories included in these tests.

    We used the Kaplan-Meier survival function to compare overall patients’ survival in relation to their experiences with CNS for all cancers and obtained the log-rank test to test for statistical significance. We used univariable and multivariable Cox proportional hazards regression analyses to estimate unadjusted and adjusted HRs with 95% CIs to assess the risk of death according to patients’ experiences for each cancer. As previously explained, the three categories for patients’ experiences were excellent, non-excellent and no CNS name was given, using the ‘excellent’ experience as the reference group. We included all three aspects of patients’ experiences with CNS that are reported in CPES: the ease of contacting their CNS, feeling that a CNS had listened to them and the degree to which explanations given by a CNS were understandable. Based on previous literature, several factors were considered as potential confounders of the relationship between patient experience and survival. We included sex, age, socioeconomic deprivation, ethnicity, area of residence, route to diagnosis, time between date of diagnosis and survey mail out (in days), and stage at diagnosis in our modelling, as these factors have previously been linked to variation in patients’ experiences,22–24 27 and shown to be associated with cancer survival.28–30 We evaluated the assumption of proportional hazards using Schoenfeld residuals.

    Assessing health outcomes based on survey responses is problematic due to the possibility of reverse causation where the current patient’s health status might influence their response to the outcome measured by the survey. This type of reverse causation has been warned against in the literature that investigated the association between patients’ satisfaction and their health outcomes.2 In this study, it might well be argued that patients could rate their experiences with care based on their prognosis and/or extent of their current disease progression. Specifically, patients who have a worse cancer prognosis might rate their experience as negative based on their disease prognosis, how they feel about this, the treatment they have to undergo and the impact of both on their life in general, rather than on the actual care their received. A potential way to assess the impact of this issue is to eliminate patients with the worst outcomes in a sensitivity analysis.31 32 Therefore, we reanalysed survival excluding patients with the worst outcomes (lowest 25th quartile of survival time: colorectal 731 days; lung 202 days; breast 1820 days; prostate 1340 days). All statistical analyses were carried out using Stata V.15.1 (Stata Corp, Texas, USA).

    Patient involvement in this study

    The study research team worked and shared methods and findings of this study with two patient representatives (MB and JR) at the National Cancer Research Institute. They themselves had conducted work on the CPES and were familiar with some of the data used in this study. The representative team members provided invaluable insight into aspects of the data analysis plan and assisted with the drafting of this paper.

    Results

    The final study population included 99 371 patients (colorectal n=24 734; lung n=12 222; breast n=43 920; prostate n=18 495) who responded to CPES between 2010 and 2014. Overall, the proportions of patients reported being given the name of a CNS were 90% of patients with colorectal cancer, 92% of lung, 94% of breast and only 86% of patients with prostate cancer. According to cancer type, tables 2–5 show the distributions of patients’ sex, age, ethnicity, socioeconomic deprivation, geography of residence, route to diagnosis and disease stage at diagnosis according to their reported experience with CNS. More than 89% of patients with colorectal, lung, breast and prostate cancer reported an excellent care experience with the two following care aspects: feeling that a CNS had listened to them and that the explanations given by CNS had made sense. However, the proportion of patients reporting excellent experience with ease of contacting their CNS varied between cancer types, from 72% for breast and prostate cancer to 78% for colorectal cancer. Tables 2–5 also show variation in patients’ experiences by their demographic characteristics. Patients aged 45–59 years and those with non-white ethnicity backgrounds were more likely to report negative experiences across all cancers, while women were more likely to report negative care experiences compared with men among patients with colorectal and lung cancer. Reported care experiences also varied by patients’ socioeconomic deprivation, area of residence, route to diagnosis and stage to diagnosis, but these variations were not consistent across all cancers.

    View this table:
    Table 2

    Characteristics of patients with colorectal cancer reporting their care experiences with cancer clinical nurse specialists (CNS)

    View this table:
    Table 3

    Characteristics of patients with lung cancer reporting their care experience with cancer clinical nurse specialists (CNS)

    View this table:
    Table 4

    Characteristics of patients with breast cancer reporting their care experience with cancer clinical nurse specialists (CNS)

    View this table:
    Table 5

    Characteristics of patients with prostate cancer reporting their care experience with cancer clinical nurse specialists (CNS)

    Overall, the Kaplan-Meier survival curves showed variation in patient survival according to their reported communication experiences with CNS between the three compared groups (excellent experience, non-excellent experience and no CNS name given) (figures 3 and 4). Patients who reported not being given a CNS name had the lowest survival among the three compared groups across colorectal, breast and prostate cancers. Notably, this association was in the opposite direction for patients with lung cancer. Differences in survival were also observed between the patients with excellent and non-excellent experience among all cancers and were more pronounced among patients with colorectal cancer. The differences were all statistically significant (all log-rank tests p<0.001).

    Figure 3
    Figure 3

    Kaplan-Meier survival estimates of death from any cause in (A) patients with colorectal and (B) patients with lung cancer, in relation to their care experience with CNS. CNS, clinical nurses specialist; CPES, Cancer Patient Experience Survey,

    Figure 4
    Figure 4

    Kaplan-Meier survival estimates of death from any cause in (C) patients with breast and (D) prostate cancer, in relation to their care experience with CNS. CNS, clinical nurses specialist; CPES, Cancer Patient Experience Survey,

    Table 6 shows the results of the different Cox proportional hazards regression models for analysis of the association between patient experience and survival. After adjusting for age and sex in model 1, the results show that among those who reported not being given a CNS name, the highest risk of death was in those with colorectal, breast and prostate cancers (colorectal HR: 1.78; 95% CI: 1.68 to 1.88; breast HR: 1.94; 95% CI: 1.82 to 2.08; prostate HR: 1.58; 95% CI: 1.48 to 1.69). These estimates were slightly attenuated by further adjustment for stage of disease (model 2). The association, however, was more clearly attenuated when fully adjusted for all covariables (model 3). The association remained strong among colorectal and breast cancers only (colorectal HR: 1.40; 95% CI: 1.32 to 1.84; breast HR: 1.34; 95% CI: 1.25 to 1.44). Among patients with lung cancer, however, the picture differed. Those who reported not being given a CNS name had a lower risk of death compared with other groups, but this association was attenuated when adjusted for stage, and in the fully adjusted model (HR: 0.92; 95% CI: 0.84 to 0.98).

    View this table:
    Table 6

    HR of death for all patients with cancer according to their care experience with cancer clinical nurse specialists (CNS)

    Patients’ experience with the degree to which explanations given by a CNS were understandable was the aspect of CNS communication most strongly associated with the risk of death, followed by the experience of feeling that a CNS had listened to them (table 6). Among colorectal, breast and prostate cancers, those patients who reported non-excellent experiences with understanding CNS explanations had higher risk of death compared with those who reported excellent experiences (colorectal HR: 1.22; 95% CI: 1.12 to 1.30; breast HR: 1.23; 95% CI: 1.14 to 1.31; prostate HR: 1.26; 95% CI: 1.15 to 1.39, model 3).

    In the sensitivity analysis (table 6, model 4), we excluded patients in the lowest 25% quartile of survival time to investigate whether the association between patients’ experiences and their survival might be prone to reverse causation. Our hypothesis being that patients with better cancer prognosis might be more likely to be assigned to a CNS, and those with the poorest prognosis might be more likely to be referred initially to a palliative care nurse. The association was only sensitive to this adjustment among patients with breast cancer who reported not being given a CNS name (HR: 1.05; 95% CI: 0.85 to 1.09).

    Discussion

    Measuring experiences with care of patients with cancer is vital to assess, monitor and deliver better care.33 This study examined whether having a better care experience with a CNS is associated with better cancer survival in England. Overall, survival of patients with cancer varied in relation to their reported communication experiences with a CNS between the three groups compared (excellent experience, non-excellent experience and no CNS name given). Patients who reported not being given a CNS name had the lowest survival and those who reported excellent experience had the highest survival for colorectal, breast and prostate cancers. Adjustment for potential confounders attenuated these associations, but significant associations remained.

    To our knowledge, this study is the first to use linked cancer experience and cancer registration data to examine the association between patients’ experiences and their survival in England. Our study is particularly important as it has shown that better care experiences are associated with better patient outcomes. There are several explanations for our findings. One way of interpreting is that better experiences with CNS enable a trusted relationship to grow more quickly in the initial period after diagnosis, which therefore promote continuity of care and help patients to navigate the cancer care pathway. This could prevent or offset the effect of seeing different clinicians at subsequent appointments and of needing to re-explain concerns, which patients often describe as a frustrating experience. The lack of a trusting relationship is therefore expected to lead to less adherence with CNS instructions, less seeking of CNS help or advice from the CNS, especially around treatment decision-making.

    The importance of CNS in cancer care has been shown in our previous analysis, where we showed that those who reported being given a CNS name had better experiences with care coordination, involvement in treatment decisions, and the overall care experience across colorectal, lung, breast, and prostate cancers.18 In addition, the CNS is a direct access point for getting help and support from the whole cancer team when it is needed.15 34 In particular, when patients have new or developing symptoms, they may contact the CNS who will then speak to the oncology team or allied health professionals. In cases where a CNS is not able to manage a patient’s symptoms, they arrange for them to see the oncology team. From a patient’s perspective, that process is seamless and timely, and without a CNS, it is very hard to access the oncology team meaning that a lot of time can potentially be wasted resulting in symptoms not being dealt with in a timely fashion. Previous research has shown that patients report more positive experiences of care coordination in Trusts where there are more CNS per patient.11 Future research should focus on whether it is CNS availability, the size of the cancer centre or its ability to foster organisational cultures that empower both CNS and the whole cancer team that lead to the improved experiences of care and outcomes. Our results showed some variation but limited association between patients’ experiences of CNS care and outcomes. The association between patients’ experiences with CNS and their survival was attenuated after we adjusted for differences in patient mix and additional covariables. While our findings do not prove causality, they suggest that the CNS role is having an influence on both experiences of patients with cancer and their subsequent survival.

    Previous studies found that patients with lung cancer who were assessed early by CNS were more likely to have an increased treatment uptake,20 a lower hazard of death (HR=0.83, 95% CI: 0.73 to 0.94) or hospital unplanned admissions.12 Among patients with lung cancer, the association between experience with CNS and survival almost disappeared after adjusting for stage in model 2. Most patients with lung cancer who are seen by a CNS have late-stage disease, which may explain the lack of a clear association once confounding by stage is accounted for. A recent study from the USA assessed the association between patients’ experiences with several care aspects and their survival from the 10 most common cancers in the USA.35 Patients who reported lower overall care experiences also had a higher risk of death, but the association was attenuated after adjusting for several possible confounders including patients’ demographic factors and their healthcare utilisation.35 While this pattern has been shown in our study, it also raises an important question about the complexity of factors affecting patients’ survival throughout the care pathway and the possibility of residual confounding in this association. For example, a recent review has highlighted the positive effectiveness of early palliative care on improving quality of life and increases the survival of patients with cancer.36 After adjusting for all covariables (model 3), patients’ experience with the degree to which explanations given by a CNS were understandable was the aspect of CNS care that appeared to be most strongly associated with a decreased risk of death for the patient. It is of interest for future research to investigate the sensitivity of all the CNS questions in CPES in capturing patients’ experiences.

    Our results show that the highest risk of death was in those with colorectal, breast and prostate cancers, but this association seemed reversed among patients with lung cancer, although attenuated when accounting for potential confounders. It is possible that the remaining association can be explained by residual confounding. We assume that observed variations in survival in relation to patients’ experiences between the four main cancers might be explained by the fact that CPES only samples a section of the wider population with cancer. Two studies have shown that patients with the poorest prognosis are not always well represented, and this pattern was more pronounced among patients with lung cancer,37 38 making the patients with lung cancer responding to CPES the least representative of all patients with lung cancer. Although this does not explain the findings in this study, it does warrant caution as to the interpretation of the findings regarding the care experiences of the wider population of patients with lung cancer. It is possible that patients with better prognosis are more likely to be referred to a CNS in lung cancer. A previous study focused on patients with lung cancer between 2007 and 2011 showed that older patients with poor performance status, patients receiving any anticancer treatment and patients with comorbidities were less likely to be assessed by a CNS.39

    One strength of our study is the large sample size and the different cancer types studied. NCRAS is considered one of the most comprehensive cancer registration systems in the world. This allowed for detailed case-mix adjustment of this association using a large sample and diverse population with cancer. In addition, there is a gap in the literature on research assessing the possible influence of care experiences on outcomes. This study begins to fill this gap in the literature and adds new knowledge that can be used for designing studies in this area.

    However, we recognise that our study has some limitations. First, NCRAS data completeness for stage and ethnicity has improved since 2012, while routes to diagnosis data became available in England after 2006.26 Therefore, a proportion of patients had missing information on disease stage, ethnicity and route to diagnosis.40 In addition, treatment episodes are important in experiences and survival of patients with cancer, and a potential confounder when assessing the association between patients’ experiences and their subsequent survival. Treatment data, however, are not recorded in great detail in the cancer registry for the patient cohort in this study—patients who were diagnosed prior to 2013. We, therefore, did not account for treatment in the survival models and recommend future studies assess the feasibility of linking recent CPES rounds to link new treatment datasets within NCRAS26 41 and so assess the impact of different types of treatment episodes on patients’ experiences. Additionally, patient experience surveys are prone to high reporting of excellent experiences, giving rise to relatively low contrast and there is a possibility that patients who reported contacting a CNS were more likely to be more health literate or actively involved in their own cancer care. Finally, although the CPES 4-year iterations of CPES (2010−2014) included in this study might appear as outdated now, this CPES dataset is the most updated series currently linked to the cancer registry, and this linkage has also allowed for long-term follow-up of patients.

    Conclusion

    This study demonstrates evidence of limited association between patients’ experiences with a CNS and their subsequent outcomes. Our findings can be used by cancer policymakers, charities, cancer services and patient representatives as evidence of the significant role CNS play in cancer care. Future research should focus on determining what aspects of patients’ experience with CNS play the most vital role in patients’ assessment, treatment and their subsequent survival. Future research might build on this work and focus on more than one aspect of care experience and thus assess whether these results are consistent across other relevant aspects of experience and the full range of all other cancers.

    Data availability statement

    Data may be obtained from a third party and are not publicly available. The data that support the findings of this study are available from NHS Digital but restrictions apply to the availability of these data, which were used under license for the current study, and so are not publicly available. The authors do not own these data, and therefore are not permitted to share or provide these data other than in scientific communication format.

    Ethics statements

    Patient consent for publication

    Ethics approval

    The National Cancer Registration and Analysis Service has approval from the Confidentiality Advisory Group of the National Health Service Health Research Authority to carry out surveillance using the data they collect on all patients with cancer under section 251 of the NHS Act 2006. SAA (the lead author) was a PhD student at King’s College London and has been guaranteed a studentship agreement with the National Cancer Registration and Analysis Service at Public Health England, and therefore, separate ethical approval was not required for this study. All methods were carried out in accordance with relevant guidelines and regulations.

    Acknowledgments

    This work uses data that have been provided by patients, the NHS and other healthcare organisations as part of patient care and support. The data are collated, maintained and quality assured by the National Disease Registration Service, which is part of NHS Digital. We also thank Dr Jo Armes for helpful comments and suggestions on this analysis.

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    Footnotes

    • X @SalehAlessy

    • Contributors SAA, ML and ED designed the study and decided the analytical approach. SAA was responsible for extracting and analysing the data. All authors (SAA, ML, JR, MB and ED) contributed to the interpretation of the results and the writing of this manuscript. SAA is the the guarantor, and accepts full responsibility for the finished work and/or the conduct of the study, had access to the data, and controlled the decision to publish

    • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.