Cancer Patient Experience Survey Research Articles

Cancer in prison: barriers and enablers to diagnosis and treatment

Approximately 82,000 people are in prison annually in England and Wales. Limited research has investigated cancer in this population and none has explored experiences of imprisoned people with cancer. This study aimed to address this gap. We conducted 55 semi-structured, qualitative, audio-recorded interviews with: imprisoned people with cancer (n=24), custodial staff (n=6), prison healthcare staff (n=16) and oncology specialists (n=9). Data were collected 07/10/2019-20/03/2020. Patients were recruited by prison healthcare staff and interviews were conducted face-to-face. Professionals were recruited via professional networks and interviews were conducted face-to-face or via telephone. Transcribed interviews were analysed using reflexive thematic analysis. We also analysed relevant National Cancer Patient Experience Survey (NCPES) questions for those diagnosed in prison (n=78) and in the general population (n=390). Our findings highlight the complexities of cancer care for imprisoned people. We identified three core themes: control and choice, communication, and care and custody. Whilst people in prison follow a similar diagnostic pathway to those in the community, additional barriers to diagnosis exist including health literacy, the General Practitioner appointment booking system and communication between prison and oncology staff. Tensions between control and choice in prison impacted aspects of cancer care experience such as symptom management and accessing cancer information. NCPES results supported the qualitative findings and showed people in prison reported significantly poorer experiences than in the general population. Our findings demonstrate the complexity of cancer care in custodial settings, identifying barriers and enablers to equitable cancer care provision and offering insights on how to improve care for this population. National Institute for Health and Social Care Research Delivery Research Programme 16/52/53 and Strategic Priorities Fund 2019/20 Research England via University of Surrey.

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....

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.

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.

P2.04-01 Lung Cancer Patient Experience Survey from Twelfth Central and Eastern Europe Countries

Croatian Coalition of Associations in Healthcare distribute an online Cancer Patient Experience Survey with aim to identify areas that need to be addressed. Initiative was supported by national patient’s oncology associations from twelfth Central and Eastern Europe countries.

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...

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.

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.

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.

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.

Exploring patient experiences of cancer care in Northern Ireland: A thematic analysis of free-text responses to the 2018 Northern Ireland Patient Experience Survey (NICPES)

BackgroundCancer diagnosis, treatment and survivorship is multifaceted, and the cancer patient experience can serve as a key indicator of healthcare performance and quality. The purpose of this paper was to analyse free-text responses from the second Northern Ireland Cancer Patient Experience Survey (NICPES) in 2018, to understand experiences of care, emerging themes and identify areas for improvement.MethodsA 72-item questionnaire (relating to clinical care experience, socio-demographics and 3 free-text questions) was distributed to all Health & Social Care Northern Ireland patients that met the inclusion criteria (≥ 16 years old; confirmed primary diagnosis of cancer and discharged between 1st May and 31st October 2017) in June 2018. Participants could complete the questionnaire online or access a free telephone support line if required. Open-ended free text responses were analysed thematically to identify common themes. Free text responses were divided into positive or negative comments.ResultsIn total, 3,748 people responded to the survey, with 2,416 leaving at least one free text comment (69 %). Women aged 55–74 years were most likely to comment. Overall, 3,644 comments were left across the three comments boxes, which were categorised as either positive (2,462 comments; 68 %) or negative / area for improvement (1,182 comments; 32 %). Analysis of free text responses identified six common themes (staff; speed [diagnosis and treatment]; safety; system; support services and specific concerns), which were all related to the overarching theme of survival. Staff was the largest single theme (1,458 responses) with overwhelmingly positive comments (1,322 responses; 91 %), whilst safety (296 negative comments; 70 %) and system (340 negative comments; 81 %) were predominantly negative. Negative comments relating to primary care, aftercare and the cancer system were reported.ConclusionsThe high response rate to the free text comments indicates patients were motivated to engage. Analysis indicates most comments provided were positive in nature. Most survey respondents reported a positive experience in relation to staff. However, there were a number of areas for improvement including the aftercare experience, and a perceived disconnect between primary care and cancer services. These results can help inform the effective delivery of cancer services in Northern Ireland.

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.