National Cancer Patient Experience Survey, 2015

DOI

Abstract copyright UK Data Service and data collection copyright owner.The National Cancer Patient Experience Surveys (NCPES) began in 2010, after the 2007 'Cancer Reform Strategy' set out a commitment to establish a new survey programme. The NCPES is intended to be a vehicle enabling and supporting quality improvement in the NHS and has been used by national bodies, NHS Hospitals, specialist cancer teams, and national and condition specific charities to improve services for patients. It is designed to monitor national progress on cancer care and to help gather vital information on the Transforming Inpatient Care Programme, the National Cancer Survivorship Initiative and the National Cancer Equality Initiative. An Advisory Group was set up for the NCPES with the National Cancer Director, professionals, voluntary sector representatives, academics and patient survey experts. The Group agreed on the following guiding principles and objectives:a standard national survey tool was to be usedsurveys would be conducted at Trust level and identify cancer groupsthe survey would cover all cancers and include the whole care pathwaythe survey should use the word 'cancer' unlike the 2000 and 2004 surveysthe survey focus would be on patients (rather than carers)the data would be used for benchmarking performance across Trusts and by cancer groups where numbers allowthe data would be used to inform national and local policythe data would be made publicly available whilst observing patient data protection requirements and maintaining confidentiality. The survey is intended to be a vehicle enabling and supporting quality improvement in the NHS and has been used by national bodies, NHS Hospitals, specialist cancer teams, and national and condition specific charities to improve services for patients. The NCPES has been replicated in Wales (see SN 7510), Northern Ireland, the Isle of Man, parts of Australia, and the Middle East. Further information can be found on the Quality Health Limited National Cancer Patient Experience Survey webpage and the NHS England Cancer Patient Experience Survey webpage. 2010-2015 surveys temporarily withdrawn The data for the 2010-2014 surveys were temporarily withdrawn at the request of the depositor in October 2015. The 2015 data (SN 8163 and the Special Licence version, SN 8164)  were temporarily withdrawn at the request of the depositor in February 2020.

2015 survey: The purposes of the Cancer Patient Experience Survey, 2015 were: to secure continuous improvement by building on the results of the 2014 survey and to enable local providers to assess their performance improvement with other providers; to enable commissioners to assess local improvements in cancer patient experience via locally agreed Commissioning for Quality and Innovation (CQUIN) schemes; to provide NHS England with an up to date overview of cancer patient experience across England; to provide NHS Improving Quality with data on each participating trust and the areas on which quality improvement needs to be focussed; and to enable patients to make informed choices about where to go for cancer treatment via publishing the provider level analysis on publicly available websites. The 2015 data are based on the experience of an initial sample of 116,991 cancer patients, reduced to 108,272 through checking and deceased status measures, and in total 71,186 responded, either by post or online, phone or through the Quality Health translation service. The response rate was 65.7% overall, in line with the levels attained in previous years. This study, SN 8163, is an edited version of the data collection, subject to standard End User Licence access conditions. NHS England has devised a set of rules to be applied to the data and edited the dataset in order to suppress any personal identifiable information in accordance with the ICO's guidelines on anonymisation and the National Statistician's guidance on suppressing disclosive data. These rules are designed such that there will be no less than three respondents shown when any given cross-tabulation is applied to the data. The rules by which the data are suppressed are as follows. Age suppressed into 4 categories: <55, 55-64, 65-74, 75+. Ethnicity suppressed into 3 categories: White British, non-white British, not specified. Response mode suppressed into three categories: online/postal/other. Cancer type suppressed into the following: Anal; Bladder; Breast; Cervical; Colon; DCIS; Endometrial; Leukaemia; Lung; Melanoma; Multiple myeloma; Non Hodgkins lymphoma; Oesophageal; Ovarian; Pancreatic; Prostate; Rectal; Renal; Secondary; Soft Tissue; Stomach; Testicular; Thyroid; Lip oral cavity and pharynx; Other - this group is defined as C00-C14; ** this group contains all ICD10 codes not represented in other groups. Geographical information has been removed. A more detailed version of the 2015 data, held under SN 8164, is available under restrictive Special Licence Access conditions. This contains hospital of treatment, geographic information and more detailed demographic information.

Main Topics:The data cover different stages of the patients' 'cancer journey', from diagnosis to outpatient treatment: initial GP visits before diagnosis (how many appointments, time period)diagnostic tests (understanding of these)how patients were told about the cancer diagnosis (understanding, sensitivity, written information)decisions on treatment (understanding, side effects explained, involvement in decision making, written information)whether patients were given a named key worker (Cancer Nurse Specialist provision and experience of them)support measures patients were informed about (information on support groups, financial help, free prescriptions)hospital doctors (understanding, confidence and trust in them, knowledge of patient case)ward nurses (understanding, confidence, availability)overall hospital care and treatment (information provision, privacy, knowledge of case, pain control, dignity and respect)information provided before going home (written information and understanding, information on care at home and health or social services provision)day patient experience (radiotherapy, chemotherapy, side effects, pain control, emotional support, appointment delay, time with doctor, doctor notes and case understanding)wider care experience (hospital and community staff working together, information transfer)demographic datainformation provided by the participating Trusts such as date of discharge, diagnosis etc.Standard Measures: Positive scoring methodology was used to create individual question scores. The National Report used analysis of IMD deciles based on patients' postcodes provided as part of the dataset by individual NHS Trusts. Standard statistical tests were used to establish statistical significance and a description of these is included in the National Report.

The survey asked all cancer patients about their experiences of the NHS cancer pathway; from diagnosis through to treatment through to aftercare, as well as some questions about protected characteristics.

No sampling (total universe)

Telephone interview

web-based survey

Postal survey

Identifier
DOI https://doi.org/10.5255/UKDA-SN-8163-1
Metadata Access https://datacatalogue.cessda.eu/oai-pmh/v0/oai?verb=GetRecord&metadataPrefix=oai_ddi25&identifier=0de6074f3a0fc2162a3b1ea622adc2dc8dd47318dc39739e7f3907eea519fc61
Provenance
Creator NHS England; Quality Health
Publisher UK Data Service
Publication Year 2017
Funding Reference NHS England
Rights <a href="https://www.nationalarchives.gov.uk/information-management/re-using-public-sector-information/uk-government-licensing-framework/crown-copyright/" target="_blank">© Crown copyright</a>. The use of these data is subject to the <a href="https://ukdataservice.ac.uk/app/uploads/cd137-enduserlicence.pdf" target="_blank">UK Data Service End User Licence Agreement</a>. Additional restrictions may also apply.; <p>The Data Collection is available to UK Data Service registered users subject to the <a href="https://ukdataservice.ac.uk/app/uploads/cd137-enduserlicence.pdf" target="_blank">End User Licence Agreement</a>.</p><p>Commercial use of the data requires approval from the data owner or their nominee. The UK Data Service will contact you.</p>
OpenAccess true
Representation
Resource Type Numeric
Discipline Social Sciences
Spatial Coverage England