English Cancer Patient Experience Survey Research Articles

Bowel cancer diagnosis experiences as a predictor of overall care rating: evidence from the English Cancer Patient Experience Survey

ObjectiveTo investigate whether and which negative diagnosis-related experiences of patients newly diagnosed with colorectal cancer (CRC) are associated with a poorer overall rating of care, to help prioritise interventions.MethodsA secondary...

Are people with mesothelioma who respond to the English Cancer Patient Experience Survey representative of the national mesothelioma population? A data comparison with cancer registry patients from the National Lung Cancer Audit.

More than 2,700 people are diagnosed with mesothelioma each year in the UK. Survival from mesothelioma is poor and to ensure service users' perspectives are incorporated in designing the most effective strategies to improve healthcare in England, the English Cancer Patient Experience Survey (CPES) is carried out annually in people diagnosed with cancer. We assessed whether the mesothelioma population responding to the English CPES is representative of the national mesothelioma population. Data from all people in England from the National Cancer Registry defined as having an incident mesothelioma diagnosis (2009-2015) were included. Data were linked across multiple sources including CPES. Using multivariable logistic regression, clinical and sociodemographic characteristics were compared between CPES respondents with mesothelioma and all people with mesothelioma in England. We identified 15,587 people diagnosed with mesothelioma, of which 1,597 (10.3%) were included in CPES. Adjusted odds ratios showed that representation in CPES decreased with older age, later stage, worse performance status, multiple comorbidities or emergency presentation at diagnosis. Gender was reasonably represented, although people with non-white ethnicity and from more deprived socioeconomic groups were underrepresented. lung cancer nurse specialist assessment was not associated with inclusion in CPES, however, having a lung cancer nurse specialist present at diagnosis was. Representation in CPES was highest for people who had chemo-radiotherapy (fully adjusted odds ratio 6.52 (95% confidence interval 5.34-7.96). Responses were included across all sociodemographic and clinical groups, but there was unbalanced representation when compared with the national mesothelioma population. Patients who do not receive anti-cancer treatment are particularly under-represented. It is important to consider the impact of person characteristics on CPES representation when using cancer experiences to plan service management.

85 - Who is assessed by a lung cancer nurse specialist in the English Cancer Patient Experience Survey?

85 - Who is assessed by a lung cancer nurse specialist in the English Cancer Patient Experience Survey?

Using patient experiences to evaluate care and expectations in lung cancer: analysis of the English Cancer Patient Experience Survey linked with the national cancer registry

PurposeIdentification of unmet needs in person centred and supportive care could be limited by differences in experience across specific cancer populations. Using the experiences of people with lung cancer, we assess distinctions according to demographic and clinical characteristics.MethodsThe English Cancer Patient Experience Survey was linked to the national cancer registry. The primary outcome was experience of the lung cancer pathway when assessed in multi-question models developed with item response theory. Secondary outcomes were experience by treatment received and in separate dimensions of the care pathway: up to diagnosis, treatment information, and staff support.ResultsResponses from 15,967 adults with a lung cancer diagnosis between 2009 and 2015 were included. Positive experiences were more likely to be reported by people aged between 65 and 80 (adjusted coefficient 0.08, 95%CI 0.05;0.11), those living in the most deprived areas (adjusted coefficient 0.10, 95%CI 0.05;0.14), diagnosed at lung cancer stage IIA–B (adjusted coefficient 0.09, 95%CI 0.04;0.14), and those diagnosed through inpatient elective admissions (adjusted coefficient 0.17, 95%CI 0.07;0.28). Specific experiences differed across dimensions of care and within lung cancer treatment groups.ConclusionsExperiences differed according to gender and ethnicity, supporting previous observations in cancer. In contrast to previous studies, people with lung cancer were more likely to report positive pathway experiences at older ages, living in more deprived areas, or diagnosed after stage I, all frequently associated with worse clinical outcomes. The distinct observations in lung cancer specific analyses suggest potential unmet needs, such as in early stage disease and younger age groups.

The underlying structure of the English Cancer Patient Experience Survey: Factor analysis to support survey reporting and design.

BackgroundThe English Cancer Patient Experience Survey (CPES) is a regularly conducted survey measuring the experience of cancer patients. We studied the survey's underlying structure using factor analysis to identify potential for improvements in reporting or questionnaire design.MethodsCancer Patient Experience Survey 2015 respondents (n = 71,186, response rate 66%) were split into two random subgroups. Using exploratory factor analysis (EFA) on the first subgroup, we identified the survey's latent structure. EFA was then applied to 12 sets of items. A first (“core”) set was formed by questions that applied to all participants. The subsequent sets contained the “core set” plus questions corresponding to specific care pathways/patient groups. We used confirmatory factor analysis (CFA) on the second data subgroup for cross‐validation.ResultsThe EFA suggested that five latent factors underlie the survey's core questions. Analysis on the remaining 11 care pathway/patient group items also indicated the same five latent factors, although additional factors were present for questions applicable to patients with an overnight stay or those accessing specialist nursing. The five factors models had an excellent fit (comparative fit index = 0.95, root mean square error of approximation = 0.045 for core set of questions). Items loading on each factor generally corresponded to a specific section or subsection of the questionnaire. CFA findings were concordant with the EFA patterns.ConclusionThe findings suggest five coherent underlying sub‐constructs relating to different aspects of cancer health care. The findings support the construction of evidence‐based composite indicators for different domains of experience and provide options for survey re‐design.

How do patients with malignant brain tumors experience general practice care and support? Qualitative analysis of English Cancer Patient Experience Survey (CPES) data.

BackgroundEnglish Cancer Patient Experience Survey (CPES) data show patients with brain cancer report the least-positive experiences of general practice support. We aimed to understand these findings by identifying the issues described in qualitative survey feedback and suggest how care may be improved.MethodsWe reviewed 2699 qualitative comments made to open questions about what was good or might be improved about National Health Service care between 2010 and 2014. We identified 84 (3%) specific comments about general practice care and used open coding and framework analysis to develop a thematic framework.ResultsWe identified 3 key themes and 12 subthemes: first, the experience of initial diagnosis by a general practitioner (GP), including apparent complexity of making the diagnosis, apparent slowness in referral for investigation, referral made by patient or family, delay in receiving scan results, and whether the GP quickly identified the problem and referred to a specialist; second, the experience of care and support from the general practice, including lack of supportive response from the GP, lack of follow-up care from the GP, lack of family involvement by the GP, lack of GP knowledge about management, and whether the GP responded in a supportive way to the diagnosis; and third, the experience of overall coordination in care, including lack of communication between the hospital and general practice and good communication about the care plan.ConclusionQualitative responses from patients with brain cancer reveal their needs for better emotional and practical support within primary care. Suggestions include increasing the speed of initial referral for investigation, the depth of discussion about diagnostic difficulties, and developing coordinated care plans with cancer centers.

Is the English Cancer Patient Experience Survey representative? A comparative analysis with the National Lung Cancer Audit

ObjectivesHealthcare systems increasingly recognise the importance of service users’ perspectives for improving care organisation and delivery. The English Cancer Patient Experience Survey (CPES) is carried out annually, however, its representativeness within cancer types is unknown. We have explored if the CPES results are representative of people with lung cancer. Materials and methodsWe linked cancer registry data across multiple sources to assess how CPES represents sociodemographic and clinical characteristics of the National Lung Cancer Audit population, accounting for post-sampling mortality bias. Multivariable logistic regression was used to compare people included and not included in CPES. ResultsOf 240,375 people diagnosed (2009–2015), 15,967 (7 %) were included in CPES. Gender and ethnicity were reasonably represented, as were sociodemographic and clinical groupings, although more received anti-cancer treatment (96 % of CPES respondents vs. 56 % of patients nationally; adjusted odds ratio = 10.3, 95 % confidence interval 9.4–11.2 for any anti-cancer treatment) with chemotherapy most over-represented, followed by surgery and then radiotherapy. CPES under-represented older, more socioeconomically deprived, and certain clinical groups, including those with worse performance status, multiple comorbidities, and diagnosis via emergency presentation. ConclusionCPES includes patients across the sociodemographic and clinical spectrum indicating its value for research and service planning. Unbalanced representation of incident lung cancer cases is a limitation that must be considered in context of using CPES findings to implement service changes. Although half the national lung cancer population who received no anti-cancer treatment do not have their experiences represented, the strength of this dataset is in providing detailed comparisons of patient experiences across different treatment groups.

Patient Experience Drivers of Overall Satisfaction With Care in Cancer Patients: Evidence From Responders to the English Cancer Patient Experience Survey.

Background:Surveys collecting patient experience data often contain a large number of items covering a wide range of experiences. Knowing which areas to prioritize for improvements efforts can be difficult.Objective:To examine which aspects of care experience are the key drivers of overall satisfaction with cancer care.Methods:Secondary analysis of the National Cancer Patient Experience Survey. Logistic regression was used to examine the relationship between overall satisfaction and 10 core questions covering aspects of experience applicable to all patients. Supplementary analyses examined a further 16 questions applying only to patients in certain groups or on specific treatment pathways.Results:Of 68 340 included patients, 58 697 (86%) rated overall satisfaction highly (8 or more out of 10). The strongest predictors of overall satisfaction across all models were responses to 2 questions on experience of care administration and care coordination (odds ratio [OR] = 2.11, 95% confidence interval [95% CI = 2.05-2.17, P < .0001; OR = 2.03, 95% CI = 1.97-2.09, P < .0001, respectively, per 1 standard deviation change).Conclusion:Focusing improvement efforts on care administration and coordination has potential to improve overall satisfaction with oncological care across diverse patient groups/care pathways.

Reliability of hospital scores for the Cancer Patient Experience Survey: analysis of publicly reported patient survey data

ObjectivesTo assess the degree to which variations in publicly reported hospital scores arising from the English Cancer Patient Experience Survey (CPES) are subject to chance.DesignSecondary analysis of publically reported data.SettingEnglish...

Diagnostic route is associated with care satisfaction independently of tumour stage: Evidence from linked English Cancer Patient Experience Survey and cancer registration data

BackgroundWhether diagnostic route (e.g. emergency presentation) is associated with cancer care experience independently of tumour stage is unknown. MethodsWe analysed data on 18 590 patients with breast, prostate, colon, lung, and rectal cancers who responded to the 2014 English Cancer Patient Experience Survey, linked to cancer registration data on diagnostic route and tumour stage at diagnosis. We estimated odds ratios (OR) of reporting a negative experience of overall cancer care by tumour stage and diagnostic route (crude and adjusted for patient characteristic and cancer site variables) and examined their interactions with cancer site. ResultsAfter adjustment, the likelihood of reporting a negative experience was highest for emergency presenters and lowest for screening-detected patients with breast, colon, and rectal cancers (OR versus two-week-wait 1.51, 95% confidence interval [CI] 1.24–1.83; 0.88, 95% CI 0.75–1.03, respectively). Patients with the most advanced stage were more likely to report a negative experience (OR stage IV versus I 1.37, 95% CI 1.15–1.62) with little confounding between stage and route, and no evidence for cancer-stage or cancer-route interactions. ConclusionsThough the extent of disease is strongly associated with ratings of overall cancer care, diagnostic route (particularly emergency presentation or screening detection) exerts important independent effects.

Predictors of Postal or Online Response Mode and Associations With Patient Experience and Satisfaction in the English Cancer Patient Experience Survey.

BackgroundPatient experience surveys are important tools for improving the quality of cancer services, but the representativeness of responders is a concern. Increasingly, patient surveys that traditionally used postal questionnaires are incorporating an online response option. However, the characteristics and experience ratings of online responders are poorly understood.ObjectiveWe sought to examine predictors of postal or online response mode, and associations with patient experience in the (English) Cancer Patient Experience Survey.MethodsWe analyzed data from 71,186 patients with cancer recently treated in National Health Service hospitals who responded to the Cancer Patient Experience Survey 2015. Using logistic regression, we explored patient characteristics associated with greater probability of online response and whether, after adjustment for patient characteristics, the online response was associated with a more or less critical evaluation of cancer care compared to the postal response.ResultsOf the 63,134 patients included in the analysis, 4635 (7.34%) responded online. In an adjusted analysis, male (women vs men: odds ratio [OR] 0.50, 95% confidence interval [CI] 0.46-0.54), younger (<55 vs 65-74 years: OR 3.49, 95% CI 3.21-3.80), least deprived (most vs least deprived quintile: OR 0.57, 95% CI 0.51-0.64), and nonwhite (nonwhite vs white ethnic group: OR 1.37, 95% CI 1.24-1.51) patients were more likely to respond online. Compared to postal responders, after adjustment for patient characteristics, online responders had a higher likelihood of reporting an overall satisfied experience of care (OR 1.24, 95% CI 1.16-1.32). For 34 of 49 other items, online responders more frequently reported a less than positive experience of care (8 reached statistical significance), and the associations were positive for the remaining 15 of 49 items (2 reached statistical significance).ConclusionsIn the context of a national survey of patients with cancer, online and postal responders tend to differ in their characteristics and rating of satisfaction. Associations between online response and reported experience were generally small and mostly nonsignificant, but with a tendency toward less than positive ratings, although not consistently. Whether the observed associations between response mode and reported experience were causal needs to be examined using experimental survey designs.

Associations Between Sexual Orientation and Overall and Site-Specific Diagnosis of Cancer: Evidence From Two National Patient Surveys in England.

PurposeTo address gaps in evidence on the risk of cancer in people from sexual minorities.Patients and MethodsWe used data from 796,594 population-based English General Practice Patient Survey responders to explore the prevalence of self-reported diagnoses of cancer in the last 5 years among sexual minorities compared with heterosexual women and men. We analyzed data from 249,010 hospital-based English Cancer Patient Experience Survey responders with sexual orientation as a binary outcome, and International Classification of Diseases, Tenth, Revision, diagnosis as covariate—38 different common and rarer cancers, with breast and prostate cancer as baseline categories for women and men, respectively—to examine whether people from sexual minorities are over- or under-represented among different cancer sites. For both analyses, we used logistic regression, stratified by sex and adjusted for age.ResultsA diagnosis of cancer in the past 5 years was more commonly reported by male General Practice Patient Survey responders who endorsed gay or bisexual orientation compared with heterosexual men (odds ratio [OR], 1.31; 95% CI, 1.15 to 1.49; P < .001) without evidence of a difference between lesbian or bisexual compared with heterosexual women (OR, 1.14; 95% CI, 0.94 to 1.37; P = .19). For most common and rarer cancer sites (30 of 33 in women, 28 of 32 in men), the odds of specific cancer site diagnosis among Cancer Patient Experience Survey respondents seemed to be independent of sexual orientation; however, there were notable differences in infection-related (HIV and human papillomavirus [HPV]) cancers. Gay or bisexual men were over-represented among men with Kaposi’s sarcoma (OR, 48.2; 95% CI, 22.0 to 105.6), anal (OR, 15.5; 95% CI, 11.0 to 21.9), and penile cancer (OR, 1.8; 95% CI, 0.9 to 3.7). Lesbian or bisexual women were over-represented among women with oropharyngeal cancer (OR, 3.2; 95% CI, 1.7 to 6.0).ConclusionLarge-scale evidence indicates that the distribution of cancer sites does not vary substantially by sexual orientation, with the exception of some HPV- and HIV-associated cancers. These findings highlight the importance of HPV vaccination in heterosexual and sexual minority populations.

The Fourth Estate.

This month’s BJGP includes a study by Abel et al , who used data from the English Cancer Patient Experience Survey to examine prior general practice contacts of patients presenting in accident and emergency departments with a newly-diagnosed cancer. The results showed that, contrary to previous assertions, the majority of patients had not had numerous consultations with GPs, and one-third of them had not seen a GP at all. The sample included patients with cancers that often present as an emergency, such as seizures in patients with brain cancer, and bleeding in patients with renal and genital tract cancers. Older and poorer patients were also more likely to be diagnosed in casualty. Cancers which typically produce non-specific symptoms, such as myeloma, lesukaemia, and pancreatic and ovarian cancer, were more likely to come to light as …

Linking the English Cancer Patient Experience Survey to Cancer registration: relating patient experience to outcomes, a step towards better services and outcomes

ABSTRACT&#x0D; ObjectivesTo link the English Cancer Patient Experience Survey (CPES) to Public Health England’s cancer registration records and allow new exploration of the association between patient experience and outcomes and eventually improve service provision and patient outcomes.&#x0D; ApproachPatients’ responses from the first 4 waves (2010, 2011/12, 2013, 2014) of CPES were linked to tumour level cancer registration records. Cancer registration is available via the Cancer Analysis System (CAS).&#x0D; A patient may have multiple tumour records in CAS. Therefore, the same CPES survey result could be mapped onto multiple tumour records in the cancer registration data.&#x0D; It was necessary to match the patient records to identify the tumour records in CAS that most likely corresponded to the correct CPES response. The following criteria were used to match records at patient-tumour level: a match in the ICD-10 diagnosis codes from both datasets; and the time frames from diagnosis to discharge to best assess the correct match.&#x0D; In order to increase the matching yield, the linkage also flagged related tumour types in the two datasets, following consultation with clinical and research experts in the field.&#x0D; ResultsOver 75% of records in the survey cohort were successfully linked for each year of the survey waves. Analysis based on concordance between data items in both CPES and cancer registrations were mostly the same in the two datasets.&#x0D; As an example of the linkage potential, the overall experience of patient care was compared with stage at diagnosis. The results show that patients diagnosed at later stages have significantly lower scores of overall care. To our knowledge, this is the first time these two variables have been analysed together in regards to the care of cancer patients in England and emphasise the need for earlier cancer diagnosis.&#x0D; ConclusionThis is the first time the CPES has been linked to cancer registrations. The new linkage provides insight into how well represented the overall cancer patient population is within CPES and also assess concordance of data between them. This work is essential to support a programme of further analysis at NCRAS, in partnership with Macmillan Cancer Support and Cancer Research UK.

Post-sampling mortality and non-response patterns in the English Cancer Patient Experience Survey: Implications for epidemiological studies based on surveys of cancer patients

BackgroundSurveys of the experience of cancer patients are increasingly being introduced in different countries and used in cancer epidemiology research. Sampling processes, post-sampling mortality and survey non-response can influence the representativeness of cancer patient surveys. MethodsWe examined predictors of post-sampling mortality and non-response among patients initially included in the sampling frame of the English Cancer Patient Experience Survey. We also compared the respondents’ diagnostic case-mix to other relevant populations of cancer patients, including incident and prevalent cases. ResultsOf 109,477 initially sampled cancer patients, 6273 (5.7%) died between sampling and survey mail-out. Older age and diagnosis of brain, lung and pancreatic cancer were associated with higher risk of post-sampling mortality. The overall response rate was 67% (67,713 respondents), being >70% for the most affluent patients and those diagnosed with colon or breast cancer and <50% for Asian or Black patients, those under 35 and those diagnosed with brain cancer. The diagnostic case-mix of respondents varied substantially from incident or prevalent cancer cases. ConclusionsRespondents to the English Cancer Patient Experience Survey represent a population of recently treated cancer survivors. Although patient survey data can provide unique insights for improving cancer care quality, features of survey populations need to be acknowledged when analysing and interpreting findings from studies using such data.

Pre-referral general practitioner consultations and subsequent experience of cancer care: evidence from the English Cancer Patient Experience Survey.

Prolonged diagnostic intervals may negatively affect the patient experience of subsequent cancer care, but evidence about this assertion is sparse. We analysed data from 73 462 respondents to two English Cancer Patient Experience Surveys to examine whether patients with three or more (3+) pre‐referral consultations were more likely to report negative experiences of subsequent care compared with patients with one or two consultations in respect of 12 a priori selected survey questions. For each of 12 experience items, logistic regression models were used, adjusting for prior consultation category, cancer site, socio‐demographic case‐mix and response tendency (to capture potential variation in critical response tendencies between individuals). There was strong evidence (P < 0.01 for all) that patients with 3+ pre‐referral consultations reported worse care experience for 10/12 questions, with adjusted odds ratios compared with patients with 1–2 consultations ranging from 1.10 (95% confidence intervals 1.03–1.17) to 1.68 (1.60–1.77), or between +1.8% and +10.6% greater percentage reporting a negative experience. Associations were stronger for processes involving primary as opposed to hospital care; and for evaluation than report items. Considering 1, 2, 3–4 and ‘5+’ pre‐referral consultations separately a ‘dose–response’ relationship was apparent. We conclude that there is a negative association between multiple pre‐diagnostic consultations with a general practitioner and the experience of subsequent cancer care.

Understanding disparities and organisational variation in cancer patient experience: Lessons from the English National Cancer Patient Experience survey.

181 Background: Surveys of the experience of cancer patients are currently being introduced in several countries, including the U.S. and Canada. Insights to inform the development and use of such surveys can be acquired from the English Cancer Patient Experience Survey programme. Methods: Each of the three national surveys (2010, 2011/12 and 2012/13) had a responder sample of ~70,000 patients (response rate 64-67%) and included about 60 evaluative questions on all domains of experience, from cancer diagnosis to care after hospital treatment. Anonymous data were analysed, using appropriate logistic regression models for positive/negative experience outcomes, based on public reporting conventions. We illustrate a research programme using the survey data focusing on two questions. 1. Who are the patients at greater risk of a negative experience? 2. Does case-mix explain apparent variation between hospitals? Results: There was evidence of socio-demographic variation in cancer patient experience, consistently across questions: younger and very old patients, ethnic minorities, and women reported poorer experience. Regarding variation between patients with 36 common and rarer tumours, those with hepato-biliary and thyroid cancers were most likely to be less satisfied with their overall experience, whereas patients with breast cancer were least likely (top-to-bottom odds ratio 3.7, p&lt;0.0001). There were disparities in experience between patients treated by the same specialty for 5/9 services (p&lt;0.0001). For example, patients with ovarian, multiple myeloma, anal and renal cancer reported worse experiences than patients with other gynaecological, haematological and urological malignancies, respectively. There was high concordance between crude and adjusted ranks of hospital scores (median Kendall's τ=0.84; interquartile range: 0.82-0.88). Conclusions: Initiatives to improve cancer patient experience may be suitably targeted on patients at higher risk of poorer experience. Evidence about disparities in experience and the effect of case-mix provide useful priors to motivate similar inquiries in other healthcare settings.

Accuracy of routinely recorded ethnic group information compared with self-reported ethnicity: evidence from the English Cancer Patient Experience survey

ObjectiveTo describe the accuracy of ethnicity coding in contemporary National Health Service (NHS) hospital records compared with the ‘gold standard’ of self-reported ethnicity.DesignSecondary analysis of data from a cross-sectional survey...