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DDI2.5 XML CODEBOOK RECORD FOR STUDY NUMBER 7562 National Cancer Patient Experience Survey, 2013-2014 756210.5255/UKDA-SN-7562-1 Department of Health <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. NHS EnglandDepartment of Health UK Data Service 06 October 2014 CANCERPATIENTSMEDICAL CAREDOCTOR-PATIENT RELATIONSHIPHEALTH CONSULTATIONSMEDICAL DIAGNOSISCLINICAL TESTS AND MEASUREMENTSMEDICAL EXAMINATIONSRADIOTHERAPYCHEMOTHERAPYNURSING CAREHEALTH ADVICEHOSPITAL OUTPATIENT SERVICESAGEETHNIC GROUPSGENERAL PRACTITIONERSDRUG SIDE-EFFECTSMEDICAL SPECIALISTSINFORMATION SOURCESSOCIAL SUPPORTSURGERYHOSPITAL ADMISSIONSHOSPITAL SERVICESHOME VISITSPAIN CONTROLGENDERDEBILITATIVE ILLNESSSEXUALITYSATISFACTION WITH SERVICESRIGHT TO PRIVACYNURSESPARTICIPATION Specific diseases, disorders and medical conditionsHealth care services and policies 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:<ul><li>a standard national survey tool was to be used</li><li>surveys would be conducted at Trust level and identify cancer groups</li><li>the survey would cover all cancers and include the whole care pathway</li><li>the survey should use the word 'cancer' unlike the 2000 and 2004 surveys</li><li>the survey focus would be on patients (rather than carers)</li><li>the data would be used for benchmarking performance across Trusts and by cancer groups where numbers allow</li><li>the data would be used to inform national and local policy</li><li>the data would be made publicly available whilst observing patient data protection requirements and maintaining confidentiality.</li></ul> 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 <a href="http://www.quality-health.co.uk/surveys/national-cancer-patient-experience-survey" title="National Cancer Patient Experience Survey">National Cancer Patient Experience Survey</a> webpage and the <a href="https://www.england.nhs.uk/statistics/statistical-work-areas/cancer-patient-experience-survey" title="NHS England Cancer Patient Experience Survey">NHS England Cancer Patient Experience Survey</a> 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. The 2013-2014 survey included all adult patients who were treated for cancer between 1 September and 30 November 2013 in NHS Trusts across England. Patients with all cancers were included, defined by their ICD10 code (cancer diagnosis code). The survey covered both inpatients and day case patients. Main Topics: The data cover different stages of the patients' 'cancer journey', from diagnosis to outpatient treatment: <ul><li>initial GP visits before diagnosis (how many appointments, time period)</li><li>diagnostic tests (understanding of these)</li><li>how patients were told about the cancer diagnosis (understanding, sensitivity, written information)</li><li>decisions on treatment (understanding, side effects explained, involvement in decision making, written information)</li><li>whether patients were given a named key worker (Cancer Nurse Specialist provision and experience of them)</li><li>support measures patients were informed about (information on support groups, financial help, free prescriptions)</li><li>hospital doctors (understanding, confidence and trust in them, knowledge of patient case)</li><li>ward nurses (understanding, confidence, availability)</li><li>overall hospital care and treatment (information provision, privacy, knowledge of case, pain control, dignity and respect)</li><li>information provided before going home (written information and understanding, information on care at home and health or social services provision)</li><li>day patient experience (radiotherapy, chemotherapy, side effects, pain control, emotional support, appointment delay, time with doctor, doctor notes and case understanding)</li><li>wider care experience (hospital and community staff working together, information transfer)</li><li>demographic data</li><li>information provided by the participating Trusts such as date of discharge, diagnosis etc.</li></ul>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 NCPES 2013-2014 tested progress on comparable questions between 2010, 2012, 2013,and 2014; identified differences in experience between patients in 13 tumour groups; identified differences in performance between hospitals and the differential experience of groups of patients based on independent variables such as ethnicity, age, sexual orientation, region, presence of a clinical nurse specialist, Index of Multiple Deprivation quintile, and time point from initial diagnosis. Specific coverage included issues such as speed of admission to specialist cancer services; information provided on tests, types of cancer, operations, support groups and financial support to the patient; assessment of quality of service given by doctors, nurses, and Cancer Clinical Nurse Specialists; and quality of support given to patients by primary and community health services. Key drivers analysis has been undertaken. January 2014 - June 201401 January 201401 June 2014 England IndividualsNational Patients in England who had received inpatient/day patient treatment for cancer during September-November 2013. Numeric Repeated cross-sectional study No sampling (total universe) Three communications were despatched to patients: initial survey, and two reminders (to non-responders only).Postal survey 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>.Use of the data requires approval from the data owner or their nominee. See <restrctn> http://www.ncpes.co.uk/ https://oai.ukdataservice.ac.uk:8443/oai/provider 7562 2024-11-28T07:30:16Z ddi:codebook:2_5