National Cancer Patient Experience Survey Research Articles

Patient experience of bladder cancer: A data linkage study.

Bladder cancer is one of the most common cancers worldwide and can be managed with a range of approaches, including conservative, medical and surgical therapies. Treatment may be associated with considerable morbidity, but despite this, little data exist to reflect patients' subsequent experience. This study aims to evaluate patients' experiences of bladder cancer care by linking data from a national cancer experience survey with data routinely collected from National Health Service (NHS) sources. This study considers patient perspectives and makes recommendations to improve the patient experience of bladder cancer care. Anonymised data from the National Cancer Patient Experience Survey (NCPES) for patients who had received care for bladder cancer were collated and linked with demographic and treatment data. Questions from the NCPES were then categorised into different themes based on their content. This study focused on themes relating to lifestyle, activities of daily living (ADL), symptoms, psychological impact and body perception. Statistical analyses were used to investigate the relationship between patient reported experience, demographics and type of care received. NCPES data from 673 patients (487 male, 29 undisclosed) with at least T1 bladder cancer were analysed. Statistically significant differences were identified across the five investigated patient experience themes. No significant difference was seen in patient reported experience between bladder cancer drug treatments (such as intravesical BCG vs. intravesical chemotherapy vs. systemic chemotherapy) and radiotherapy types (curative vs. palliative). Patients treated with cystectomy had significantly worse experiences relating to body image and ADL but not when compared with patients treated with radical radiotherapy. Patients with long-term health conditions reported worse experiences for all five themes compared with those without. The literature surrounding the experience of patients with bladder cancer is limited. This data linkage study demonstrates the impact of bladder cancer care on five patient experience themes, including the effect of different treatment types and the presence of long-term health conditions. While limited by sample size and data comprehensiveness, this study aims to inform clinicians and service providers of factors affecting patient experience of bladder cancer care, to stimulate service review and development.

Letter: Two Practices to Improve Informed Consent for Intraoperative Brain Research.

To the Editor: We read with great enthusiasm the paper by Peabody et al1 discussing the challenges of the informed consent for clinical research in the context of intraoperative brain research. This is a crucial ethical challenge requiring deep reflexion in the current environment within the neurosurgical practice. The authors highlight the heterogeneous impact and retention of the information provided during the consent process as well the unique place occupied by the relational dimension between the surgeon and the patient during this process. They suggest the involvement of a patient's advocate and reconsent during awake craniotomy (if applied) to overcome some of the abovementioned limitations. At our center, we have established a dedicated neuro-oncology preoperative assessment clinic for discussing the diagnosis and the treatment plan with both patients and their relatives.2 We strongly agree that patient's relatives should be involved in the decision-making process from very early stages to support the patient to take the best informed decisions for himself. The introduction to potential research programs is performed by the responsible neurosurgeon although the research consent process is independent and performed by the research team. Nevertheless, the responsible neurosurgeon is at the center of the consent process given the personalized relational dimension outlined by Peabody et al1 and unique relationship between the surgeon and the patient, particularly in the setting of the awake craniotomy. A point that is worthwhile mentioning is how the research-derived information can help the clinical consent process. At our institution, we performed extensive preoperative mapping that is explained to the patients as part of their consent process.3,4 This significantly improves their understanding about the procedure, particularly the benefits and risks involved.5 Therefore, there is an active interaction between the clinical and research consent processes. Although they are independent in their nature, the information provided by one can facilitate the understanding of the other and promote a more informed decision and potential involvement in both treatment and research processes. Patient information for patients with cancer is a vital part to personalized informed consent6 and forms a national measure to hold UK oncology centers accountable. According to the National Cancer Patient Experience Survey in the United Kingdom,7 89.4% of patients, who underwent surgery for cancer, said that before their treatment started, they had the information they needed in a way they could understand. It demonstrated that although the experience was good, we still had more room for improvement and innovation in the way we educate patients and make them understand regarding their disease process. Different strategies have been used to improve the consent form process, such as personalized 2-dimensional and 3-dimensional imaging available during consent process8 which is aligned with the General Medical Council in UK recommendations in their principles of decision making and consent.9 Thus, pushing the boundaries with innovative technology that is patient friendly promoting positive patient experience would act as an important process in the armamentarium for the current and future neurosurgeons. The increase utilization10 and recent advances in intraoperative neuromonitoring and mapping paved the way to a better understanding of the mechanisms underlying the brain function. Despite being independent processes, clinical treatment and research have a dynamic interaction where the neurosurgical team has a pivotal role in integrating the information provided. We could not agree more that the patient is at the center of all the decisions made even at the time of surgery during awake procedures.1 The challenge to the surgical teams is to provide constantly updated information to allow the best decision-making process to the patients and their advocates before surgery and to the patient himself during the awake procedure.

Age-related experiences of colorectal cancer diagnosis: a secondary analysis of the English National Cancer Patient Experience Survey

ObjectiveThe incidence of colorectal cancer (CRC) in people aged <50 years has been increasing dramatically in the past three decades and such patients are known to face difficulties in diagnosis....

QLTI-03. AN INNOVATIVE APPROACH TO ACCESSIBLE INFORMATION FOR BRAIN TUMOUR PATIENTS AND THEIR LOVED ONES

Abstract Patient information for cancer patients is acknowledged for its vital contribution to informed consent and a positive patient experience. It forms a measure to which UK oncology centres are held to account in the national cancer patient experience survey. It could be argued that this has driven the production of such information rather than it being designed to best meet the need of the neuro-oncology patient. With this in mind a YouTube channel was set up after consulting current High Grade Glioma patients on their preferred medium. Patients wanted short clips in a conversational style explaining aspects of their treatment and the pathway. They wanted it to be available in a medium that they were familiar with either s a podcast or YouTube shorts. The CNS team requested patients choose the name of the channel and began making short videos with patients and professionals on subjects suggested by patients. In twelve weeks, we have produced 23 videos, which have had 2282 views and 105 hours of watch time. The average person watches for two hours and forty-six minutes. It is possible to extrapolate from this that people are engaging with the content. The availability of information in this form has reduced the length of conversations and emails with the CNS’s pre-operatively. Patients have reported a greater sense of comfort from hearing other patient’s stories. The authors acknowledge there is not enough data available yet to formerly support this. In conclusion patient information should be designed to meet the needs of the patient not the guidance. It needs to be accessible to patients who have neurological impairments including changes in vision and concentration and provided in a medium that is current, visual and easily accessible.

Cancer Experience of Care Improvement Collaboratives in the National Health Service in England

NHS England started the work described in this article with the ambition of using insight and feedback from the adult National Cancer Patient Experience Survey to grow coproduced service improvements leading to improved patient centred quality outcomes in experience for cancer patients. Based on the Institute for Healthcare Improvement’s Breakthrough Collaborative Series, the approach of the Cancer Experience of Care Improvement Collaboratives (CIC) in the English healthcare system was developed, initially with 19 NHS provider organisation teams in 2019 as a face-to-face model, then developing into two collaboratives with an additional 15 NHS provider organisation teams in Cohort 2 and 8 teams in Rare & Less Common Cancers in a virtual framework. Each cohort has reported improvements in patient experience, staff experience and team working, but more fundamentally, have been able to describe a cultural shift in the way they work, together with people, leaving a lasting impact and legacy of this work. Key learning has been recognised with the increasing emphasis on involving people with relevant lived experience as partners and colleagues in the collaborative, alongside flexibility, responsiveness and adaptability as key to enabling project teams to continue where COVID-19 pressures allowed to participate.

CN55 The testing times project: Collaboration in action

In the UK it is people from non-white and non-English speaking communities have a poorer experience of cancer care than those of a white, UK ethnicity. The National Cancer Patient Experience Survey has shown this over the last three years. Poorly performing questions for these communities ask respondents whether they received all information needed on cancer tests and whether results were explained in an understandable way In West Berkshire a project group was formed to address this with representatives from an Acute Hospital, a Community Comissioning Group, a cancer charity, a regional Cancer Alliance and the facilitator of a community group (the ‘Cancer Champions'). The project took a well evaluated leaflet on tests in English and translated it into three languages, Nepalese, Urdu and Polish. These represent the largest non-English speaking communities in West Berkshire. The leaflet was taken to focus groups from three communities (Neplaese, Urdu-speaking and Polish-speaking) and was firstly presented in English and views captured via a questionairre, then the same in the translated language. Structure, visual presentation, use of pictures and translation quality was appraised. The groups considered what other support might be necessary alongside the leaflet, (eg who might group members contact if they were concerned about tests for cancer) and whether the information would be more impactful in a different format. These improvements will be made, including provision in other formats and presented back to these focus groups. All communities believed the leaflet in their own language was more useful than English and some believed that a format with more pictures and simplified text would be better. All believed that a short film on ‘cancer tests' would be useful. Groups will continue to appraise this information but could also be used to consider the views of non-English speaking populations for a range of issues in cancer care. The results will be presented graphically and more results will be available on presentation. The focus group methodology and the use of PDSA cycles is an effective way of improving information given to non-English speaking community groups and a range of additional benefits to populations and to cancer care in West Berkshire will be presented.

Croatian National Cancer Patient Experience Survey.

Background: Cancer patients’ experiences of the healthcare system, care, and treatment are increasingly viewed as important in order to inform and improve quality of care, patient safety, and treatment efficacy. Understanding patient experience is a key step in moving toward patient-centred care. The aims of this study were to determine the experience of cancer patients in Central and Eastern European countries and to identify the needs and perspectives of oncological patients during the cancer treatment. In this paper, results from Croatia are presented. Methods: A sixty-nine item online survey was translated by native-language participating countries. Only registered members (subjects with confirmed cancer diagnosis) of the national patient oncology associations in each participating country were allowed to access and complete the online questionnaire (n = 16,458). Data were collected between October 2018 to February 2019. The Croatian Coalition of Health Associations enabled the authors of this paper to use the collected data from a sample of the Croatian participants (n = 2460) for the purposes of publication. Results: Two-thirds (67.3%) of the respondents reported satisfaction with the length of time needed for getting tests done. Bad news was delivered sensitively to 52.97% of the participants, and 52.76% received a cancer treatment plan. During the hospitalisation, 45.93% responded that they did not find someone from the hospital staff whom they could talk to about their worries and fears, and 57.48% were not given any contact information in case of concerns about their condition or treatment following the discharge. Regarding the patients’ preferences, needs, and values, 60.81% of the respondents felt that the greatest improvement would be to perform all services in one place, and 55.28% felt that improvement would be achieved through a multidisciplinary team coordinated by one person. Conclusions: The study reveals domains that need to be addressed in the overall Croatian healthcare system for oncology patients. Based on the obtained data, we can conclude that there is a large need for improvement in patient experience on the oncology pathway.

Cancer services patient experience in England: quantitative and qualitative analyses of the National Cancer Patient Experience Survey

ObjectivesTo examine patients’ responses to the English National Cancer Patient Experience Survey to understand what proportions of patients give positive and negative feedback, and to identify themes in responses which...

Clinical nurse specialists and survival in patients with cancer: the UK National Cancer Experience Survey

ObjectiveTo 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.MethodsWe identified 99 371 patients...

Analysis of local qualitative cancer patient experience alongside the 2019 results of the UK National Cancer Patient Experience Survey.

This study analyses data from local qualitative interviewing about what matters most to patients with information from the National Cancer Patient Experience Survey (NCPES) to formulate an accurate improvement plan. This study seeks to provide a deeper analysis of the results of the 2019 NCPES. Qualitative data were collected through a focus group, telephone and virtual interviews from patients in North East London. Ten questions from the NCPES were asked. Interviews were recorded, transcribed verbatim and analysed using an NVivo framework matrix. The results were analysed considering the 2019 National Cancer Patient Experience report. In total, 17 patients and 4 carers participated. The interview answers provided a more in-depth response when compared with the NCPES results, allowing for a deeper understanding of patient experience. This provided an insightful understanding of what matters most to our patients. The NCPES results are not always reflective of the patient population. Limitations of the survey make it hard for healthcare providers to develop accurate improvement plans. It is important to use other data sources such as qualitative interviewing alongside the NCPES. The data collated during this study have been used to identify themes and deliverables for achievable and sustainable improvements to be made.

Being assigned a clinical nurse specialist is associated with better experiences of cancer care: English population‐based study using the linked National Cancer Patient Experience Survey and Cancer Registration Dataset

ObjectiveThis study aimed to examine whether being given the name of a clinical nurse specialist (CNS) is associated with better cancer patients' experiences across different points along their cancer care pathway.MethodsWe identified 100,885 colorectal, lung, breast and prostate cancer patients who responded to the National Cancer Patient Experience Survey between 2010 and 2014. We compared experiences of four key aspects of cancer care among patients who reported being given a CNS name with those who did not, adjusting for age, sex, socio‐economic deprivation, ethnicity, route to diagnosis and disease stage.ResultsAcross all cancers, patients who reported being given the name of a CNS reported better experiences with involvement in treatment decisions, care coordination, treatment with more respect and dignity, and overall care experience. Experience of being involved in treatment decisions was the aspect of care most strongly associated with being given a CNS name (colorectal: OR 2.69, 95% CI: 2.45–2.96; lung: OR 2.41, 95% CI: 2.07–2.78; breast: OR 2.68, 95% CI: 2.47–2.92; and prostate: OR 2.11, 95% CI: 1.92–2.32).ConclusionThese findings may provide new evidence of the vital contribution CNS make to cancer care and suggest their input and support should be available to all patients after the diagnosis.

Patient experience data as enacted: Sociomaterial perspectives and 'singular-multiples' in health care quality improvement research.

Over the last three decades, sociomaterial approaches to the study of health care practices have made an important contribution to the sociology of health care. Significant attention has been paid to the role of technology and artefacts in health care and the operation of actor-networks but less space has been given to questions of ontological multiplicity in health care practices. In this paper, we draw upon our study of patient experience data in five acute hospitals in England to illustrate how treating patient experience data as 'singular-multiples' can enable useful insights into patient experience data work in health care organisations. Our data was generated during 12months of fieldwork at five participating hospitals and included organisational documents, field notes, informal and formal interviews with frontline and managerial staff and patient representatives at the study sites. We use the examples of the Friends and Family Test (FFT) and the National Cancer Patient Experience Survey (NCPES) in England to consider the multiple nature of data as it is enacted in practice and the work data does when coordinated as an entity in the singular. We argue that, and discuss how, the sociomaterial insights we discuss here are relevant to health care quality and improvement research and practice.

Effects of support network structure and position on cancer care experience

The social support that cancer patients receive from their social environment is extremely crucial for their cancer treatment. In this study, we develop a theoretical model to understand the effect of cancer patients’ support network on their experience with cancer care. To do so, the dataset of the National Cancer Patient Experience Survey (NCPES) 2010 was employed, which is among the largest datasets to capture patients’ experience with cancer care. However, the NCPES lacked clear affiliative information for conducting social network analytics and required a number of assumptions to be made regarding what constitutes evidence for a relationship. Python was used to extract social network data followed by Ego-net to calculate the social network properties of 43,674 cancer patients that have completed the survey. The results of Pearson correlation, T-test and hierarchical regression analysis demonstrated that cancer care experience is positively associated with ego density and degree centrality and negatively associated with efficiency. The findings are important for both the social network and healthcare community to improve the future service quality for patients.

Exploration of the use and impact of patient-reported experience measures (PREMs) in oncology settings: A systematic review.

166 Background: In addition to patient-reported outcome measures, the use of patient-reported experience measures (PREMs) is also developing as a patient-centred method for evaluating health performance. PREMs are tools that measure patients’ experience of health care including accessibility, the physical environment of services, and their interactions with health service providers and clinicians. This systematic review aimed to explore the use and impact of PREMs in the clinical care of cancer patients and survivors. Methods: This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. An a priori protocol was established and systematic searches of major databases (CINAHL, Medline, PsycINFO, Ovid Emcare and Scopus) were conducted between 2009 and 2019. Quantitative studies of adult or paediatric populations were eligible for inclusion. Articles reporting patient satisfaction only were excluded. Quality appraisal was conducted using the Johanna Briggs Institute Critical Appraisal Tools. A narrative synthesis of findings was conducted. Results: A total of 3246 articles were screened for eligibility with 45 studies included in the systematic review. The majority of included studies (n=37) were cross-sectional in design with a variety of PREMs used, most commonly the National Cancer Patient Experience Survey. Most studies were assessed as ‘moderate’ to ‘high’ for quality. Studies were categorised according to the use of the PREM with the majority (n=40) utilising a PREM to evaluate cancer services at the service or national level, and five using a PREM to evaluate a specific clinical intervention. Various gaps in care were identified across studies highlighting areas for improvement such as time to diagnosis and information provision. Few studies reported the barriers or enablers to PREM collection or discussed service improvement initiatives arising from them. Conclusions: Whilst PREM collection is becoming more common in oncology settings, the use and impact of this valuable data is not well reported. Patients willingly share their experiences of oncology care, yet planned or complete actions resulting from the data to improve care are seldom reported. The collection of PREMs should be met with a commitment to service improvement and longitudinal collection of PREMs is recommended to evaluate quality improvement initiatives.

Experience of Ambulatory Cancer Care: Understanding Patients' Perspectives of Quality Using Sentiment Analysis.

The move of cancer treatment into the outpatient setting can impact patient experience. Understanding how service delivery change impacts different people requires service feedback to inform future delivery development. The use of patient experience questionnaires often generates large amount of free-text data that are difficult to analyze. The aim of this study was to describe a proof-of-concept study exploring the experiences and perceptions of people undergoing cancer treatment, using novel analysis techniques to provide rapid free-text data analysis. This was a mixed-methods qualitative analysis from qualitative questions gathered in Finland using the National Cancer Patient Experience Survey (n = 92 of 208 patients) and supplemented with 7 focus groups (31 people with cancer). Data were analyzed using natural language processing, via an automated sentiment analysis algorithm and supported with focus groups to inform the initial thematic analysis. Participants were on average 65 years of age. Of the 196 free-text comments, 121 (73.6%) were positive about patient experiences and 75 (38.5%) negative with suggestions for improvement. Communication between patients and clinicians was an indicator of quality, and lack of psychological support was a barrier to quality care provision. The methodology of using sentiment analysis for free content to review quality was demonstrated through this study as a novel and feasible method to look at large-scale qualitative data. Using the free content on experience of care questionnaire to review gaps or needs in services is valuable in developing future practice.

Saudi Cancer Patient Experience: Benchmarking a single center report to the United Kingdom National Experience.

e14138 Background: Diagnosis and treatment of cancer are regarded as stressful experiences impacting the patients and their families. This study aims at comparing the Saudi cancer patient experience with the United Kingdom cancer patient experience throughout their continuum of care. Methods: Results from the United Kingdom (UK) National Cancer Patient Experience Survey (NCPES 2017) were compared to the reported results from the experience of 100 cancer patients for the same year at the National Guard Health affairs Health system in Riyadh, Saudi Arabia. Similar concepts relating to the experience were investigated and compared. Results: Compared to the UK survey, the Saudi survey had mainly higher score regarding receiving an overall positive cancer care. Scores related to provision of clear answers to all important questions, judging the hospital staff as always working well together, and family members being given the opportunity to communicate with the doctor were significantly higher among Saudis. The UK patient scored significantly higher on receiving information about diagnostic tests, treatment side effects, and discharge instructions, and being informed about support groups and on-going cancer research. Conclusions: The overall experience of the Saudi cancer patients compared favorably to the UK cancer patients; however, in the domain of information provision as an essential part of the cancer experience is still lacking in the Saudi cancer care approach. Quality improvement should focus on the findings of this study for better health outcomes. [Table: see text]

How representative are colorectal, lung, breast and prostate cancer patients responding to the National Cancer Patient Experience Survey (CPES) of the cancer registry population in England? A population-based case control study

ObjectiveTo assess the representativeness of National Cancer Patient Experience Survey (CPES) responders compared with the English cancer registry population in term of age, sex, socioeconomic deprivation, ethnicity, disease stage and...

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.

CN109 - Medical nurses’ experiences of the care-needs of adult patients with a primary brain tumour

BackgroundAdult primary malignant brain tumours are rare; however, they have a devastating impact and a poor prognosis (Ford et al., 2012). For the past seven years the National Cancer Patient Experience Survey (Quality Health, 2014) has reported the care of brain tumour patients as being less positive compared to other cancer sites, possibly due to unmet care needs. The Aims of this research were: - To explore registered medical nurses’ experiences of the care needs of adult patients with a primary brain tumour. - To identify possible gaps in knowledge and skills that limit the provision of optimal care. MethodsThe project adopted a qualitative methodological approach using semi-structured interviews to collect and analyse data to reflect the experiences of medical nurses’ in the aforementioned care context. Three participants volunteered, who met the inclusion/exclusion criteria. Participants were registered nurses who had worked on the oncology/haematology Triage Unit for 12 months or more so that they had meaningful reflection. ResultsThemes emerged from the collection and analysis of data. Three main themes emphasised that the experience was: challenging; involved holistic care and depended on nurses’ knowledge and experience. Published literature identified that brain tumour patients were different to other cancer patients because they require more nursing time to address their complex care needs. The findings highlighted that senior nurses were significantly more knowledgeable, holistic and aware of patient needs. ConclusionsJunior nurses felt they had very limited experience, confidence or knowledge to care for adult patients with a primary brain tumour. They acknowledged that education and training was essential to allow staff involved in the care of adult patients with a primary brain tumour to feel confident enough to be able to assess and care for the complex needs of this group of patients. Legal entity responsible for the studyBirmingham City University. FundingHas not received any funding. DisclosureThe author has declared no conflicts of interest.

Low-risk bowel cancer symptoms: is it time for FIT?

In 2017, 30 710 patients were diagnosed with bowel cancer in the UK.1 The disease carries a poor prognosis, being the second most common cause of cancer death in the UK.2 There is a drive to detect cancer earlier as it correlates to a better outcome. In 2017, the National Cancer Patient Experience Survey published its results, showing that 36.4%3 of patients with bowel cancer have seen their GP two or more times before they are diagnosed with cancer. One of the many initiatives to address this issue is through detecting small amounts of blood in the stool of patients with low-risk symptoms. In 2015, the National Institute for Health and Care Excellence (NICE) suggested the use of guaiac-based faecal occult blood tests (gFOBT) for this purpose. This, however, was met with opposition due to concerns about its relatively high false-negative value.4 Hence gFOBT for this purpose never materialised. In the meantime, GPs continue to find patients with low-risk bowel symptoms diagnostically challenging, as GPs often have to rely on their own clinical judgement to decide if cancer is a possible diagnosis. This year, we will see a new stool test, the faecal immunochemical test (FIT), replacing the gFOBT, which NICE proposes as the way forward. This article first defines the low-risk symptomatic patient, followed by a brief description of the two stool tests. It …