Specialist Cancer Patient Surveys
Since starting the Cancer patient experience survey programme in 2010, Quality Health has undertaken a wide range of cancer surveys and activities, for the Department of Health, NHS England, and national Cancer Charities, as well undertaking cancer patient survey work in Wales, Northern Ireland, the Isle of Man, the Middle East and Australia.
In particular, Quality Health has been supporting members of the International cancer Benchmarking Project who have been using the CPES to survey their own patients; and this means that very shortly there will be useful international comparative data on cancer services, based on using the CPES instruments and methodology.
The reports published here are of different surveys undertaken in the last 3 years, some of which have been "follow ons" from the CPES to provide greater detail on particular services (e.g. Chemotherapy and Radiotherapy); and some of which have addressed particular problems relating to cancer treatment, or to individual cancers. A short description of the nature of the survey and the report flowing from each is set out below.
Chemotherapy National Survey
This survey is published by QH on behalf of NHS England. It was initially commissioned by the National Cancer Action Team before April 2013, and is based on a sample of patients taken proportionately from each of the chemotherapy units in hospitals in England. It is the first time that a national survey of chemotherapy patients has been undertaken; the survey was designed to create a high quality national database of responses and to allow survey results manuals to be created for each of the participating Trusts where numbers of responses allowed. Survey leads in each Trust have received their data in this form.
· Radiotherapy National Survey
This survey is published by Quality Health on behalf of NHS England. It was initially commissioned by the National Cancer Action Team before April 2013, and is based on asample of patients taken from 49 of the 50 Radiotherapy Units in England. It is the first time that a national survey of radiotherapy patients has been undertaken; the survey was designed to create a high quality national database of responses and to allow survey results manuals to be created for each of the participating Trusts. Survey leads in each Trust have received their data in this form.
· Radiotherapy and Imaging Access Surveys
Two separate surveys were undertaken with cohorts of patients supplied by radiotherapy and imaging departments across England. The purpose of the surveys was to establishwhether there was support for the concept of utilising imaging and radiotherapy treatment units "out of hours", i.e. outside the normal working day. The two national reports published here show clearly that there is widespread support for attendance in the early morning, in the evening, on bank holidays and at weekends, sufficient to allow discussions to take place about the feasibility of such operations in the light of local conditions. The surveys were initially commissioned by the Department of Health, through Professor Sir Mike Richards, then National Cancer Director, and are now published here with the permission of NHS England.
· Summary of Cancer Early Symptoms Survey Results
Quality Health undertook 22 separate surveys of respondents to the 2010 Cancer Patient Experience Survey, as "follow ons” from that survey, to establish the kinds of symptoms that patients identified as their earliest and main symptoms before they were diagnosed with cancer. Patients were identified by reference to their ICD10 code for cancer and were then sampled from the cohort of respondents to the 2010 survey who had agreed to receive further surveys about their cancer care and health status. The brief report published on the Quality Health website gives outline information on the most prominent kinds of symptomsidentified by patients.
· Cancer Survivorship Survey - One Year On
Quality Health undertook the national pilot of the Cancer Survivorship Survey in 2011 and followed this up with a "One Year On" study in 2012, covering all the respondents still aliveto the 2011 survey amongst the Prostate, Breast, NHL, and Colo-rectal tumour groups. In each tumour group, the initial 2011 survey covered patients 1 year, 2 years, 3 years and 5 years out from initial treatment, and comparisons were made between time cohorts, tumour groups, and patients who had undergone particular types of treatment - such as stoma. The report on the Quality Health website is published with the permission of NHSEngland.
Reporting for National Charities
Quality Health has undertaken a number of important projects for national charities in the UK, as follows:
· Prostate Cancer UK: QH undertook surveys of men undergoing prostate cancer treatment in Scotland with the active assistance of hospital clinics, voluntary groups, and PCUK. This was to provide the first outline data for the assessment of care standards in Scotland and was funded by PCUK
· Pancreatic Cancer UK: QH has undertaken a survey of pancreatic cancer patients as a follow on from the 2013 CPES. The report will be published shortly.
· Neuro Endocrine Cancer Foundation: QH is designing a bespoke survey for patients with a confirmed diagnosis of NET cancer, based on the 6 specialist units who treat this complex group of cancers. The report will be available later this year.
· Young Persons Cancer Survey: QH is working with all the charities dealing with children, young people and teenagers in order to develop a set of surveys for cancer patients under 16, and their families and carers. A set of different issues exists for young people undergoing treatment for cancer and we anticipate that these surveys will be implemented in 2014.
Quality Health has many other cancer projects in development at present, and will report on these when we have agreement on the plans.