The first national clinical audit of prostate cancer care

Authors


Correspondence: Paul Cathcart, University College Hospital London, St. Bartholomew's Hospital London, Centre for Experimental Cancer Medicine, Bart's Cancer Institute, Charterhouse Square, London EC1M 6BQ, UK.

e-mail: pjcathcart@hotmail.com

Abbreviations
CEU

Clinical Effectiveness Unit

EBRT

external beam radiotherapy

HES

Hospital Episode Statistics

MDS

minimum dataset

MDT

multidisciplinary team

NCRS

National Cancer Registration Service

NPCA

National Prostate Cancer Audit

PREM

patient experience measure

PROM

patient-reported outcome measure

Introduction

The first national prostate cancer audit (NPCA) has recently been commissioned by The Healthcare Quality Improvement Partnership (HQIP), on behalf of the Department of Health, in response to the need for better information about the quality of prostate cancer services and care provided in England and Wales. The Royal College of Surgeons' Clinical Effectiveness Unit (CEU) has been awarded the contract for the audit, which is managed as a partnership between a team of clinical, cancer information, and audit experts from the BAUS, the British Uro-Oncology Group, the English National Cancer Outcome Registration System (ENCORE) and CEU.

Aim and Overview of the NPCA

The aim of the NPCA is to assess the process of care and outcomes in men diagnosed with prostate cancer in England and Wales. Active monitoring/surveillance of men with localised low-risk cancer is of growing interest as an alternative to potentially unnecessary radical treatment [1]. However, the availability and uptake of this approach is currently unknown and there are concerns about over-treatment of men with low-risk disease, and under-treatment of some other men with apparently low-risk disease [1]. On the other hand, some men with high-risk or locally advanced disease are placed on hormonal treatments alone, despite compelling evidence to show that multimodal treatment with external beam radiotherapy (EBRT) and hormones or combined treatment with surgery and EBRT achieves favourable outcomes [2-4]. There is also evidence that prostate cancer treatment varies according to socioeconomic status or ethnicity [5]. The NPCA will determine how often these approaches are offered and taken-up by patients, and what outcomes they achieve.

The NPCA is the first national clinical audit designed not only to address unanswered questions in prostate cancer care but also to develop a national data collection system for a prospective cancer audit that can collect complete and accurate data in a timely fashion with minimum burden to staff and patients, using existing electronic data wherever possible.

Data collection will be fully integrated through the ENCORE system of the National Cancer Registration Service (NCRS) in England, which is part of Public Health England from 1 April 2013. This online system supports cancer data collection from multiple sources including pathology, multidisciplinary team (MDT), imaging records and national feeds of radiotherapy and chemotherapy data. Vital status is updated weekly from the Office for National Statistics. The NCRS data collection will be expanded to incorporate further data sets that are part of specific audits and already has mechanisms allowing feedback to individual clinicians. This approach provides a near real-time and comprehensive data collection system over the entire cancer pathway on all patients treated in England. The NPCA is the first national clinical audit to use the NCRS, which is anticipated to support all future national cancer audits.

Objectives and Timeline of Activities

The audit will start on 1 April 2013 and continue for a minimum of 5 years. In the first year, an organisational survey of all cancer networks and NHS Trusts in England and Wales will determine the current provision and infrastructure of prostate cancer services, including service delivery, organisation of cancer care, functioning of MDTs, regional coordination of specialised services within networks and availability of diagnostic, staging and therapeutic facilities.

Analysis of existing datasets will provide comparative baseline data for the prospective audit. Hospital Episode Statistics (HES) and Cancer Registry data will be linked at patient level to provide information on trends in patient characteristics, treatments received and outcomes (complications, readmissions and mortality).

The minimum dataset (MDS) of the prospective audit will be short and simple to minimise the burden of reporting. The MDS will be designed to answer questions related to the characteristics of newly diagnosed prostate cancer, how it was detected, referral pathway, diagnostic and staging process, planning of initial and actual treatment. Communication with NHS Trusts providing prostate cancer services will ensure that each MDT clinical information system includes all data items required for the audit.

From the second year onwards (April 2014), prospective data will be collected from each newly diagnosed patient discussed at an MDT meeting and will continue throughout the audit. The MDS will be primarily collected through direct uploads of MDT databases to the NCRS in England and via the Welsh Cancer Information System in Wales. Data entered routinely into the MDT information systems will be linked at individual patient level with multiple existing databases (for example, HES and Patient Episode Data for Wales) and thereby avoid unnecessary duplication of data entry/collection.

A year later (April 2015), patient-reported outcome and patient experience measures (PROMs and PREMs) will be collected for all patients with localised prostate cancer who are candidates for either active monitoring or radical treatment 12 months after diagnosis. Questionnaires will be mailed direct to patients without any involvement of local staff. The NPCA is the first cancer national clinical audit to ascertain the impact of radical treatment using PROMs and PREMs. Patients will be asked questions on the information they received about their cancer and treatment options available, how initial treatment decisions were made, further treatments, quality of life, side-effects and sexual/urinary/bowel complications. The audit will also include a feasibility study exploring timeliness and mode of diagnosis (e.g. symptomatic or asymptomatic detection) of prostate cancer. This is important given the emphasis on early diagnosis and awareness, and evidence indicating substantial variations in stage at diagnosis by socioeconomic status and older age [6].

Data Output

The most appropriate way to make the NPCA data available to improve the quality of prostate cancer services will be explored at national, cancer network and Trust levels. In addition to publishing annual audit reports, it is anticipated that clinicians and Trusts will be able to access their own data at the MDT level in real-time, which will be benchmarked against national data returns.

Summary

The success of this important audit is dependent on the support of both urological and oncological colleagues and the participation of all NHS Trusts throughout England and Wales. The audit presents a unique opportunity to collect robust data on prostate cancer care that will contribute to changes in practice and reduce variation in prostate cancer management, which will ultimately save lives and improve quality of life for men diagnosed with the disease.

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