A national survey of hereditary colorectal cancer services in the UK

Kevin J Monahan1,
Susan K Clark2,
on behalf of the British Society of Gastroenterology (BSG) Cancer Group

+ Author Affiliations

¹Family History of Bowel Cancer Clinic, West Middlesex University Hospital, London, UK
²The Polyposis Registry, St Mark's Hospital, London, UK

Correspondence to Dr Kevin J Monahan, Family History of Bowel Cancer Clinic, West Middlesex University Hospital, Twickenham Road, Isleworth, London TW7 6AF, UK; k.monahan@imperial.ac.uk

Received 10 July 2013
Revised 13 August 2013
Accepted 14 August 2013
Published Online First 16 September 2013

Abstract

Objectives The British Society of Gastroenterology (BSG) Cancer Group designed a survey to determine how we might understand and improve the service for patients at elevated risk of hereditary colorectal cancer (CRC).

Design and Setting United Kingdom (UK) gastroenterologists, colorectal surgeons, and oncologists were invited by email to complete a 10 point questionnaire. This was cascaded to 1,793 members of the Royal College of Radiologists (RCR), Association of Cancer Physicians (ACP), the Association of Coloproctology of Great Britain and Ireland (ACPGBI), as well as BSG members.

Results Three hundred and eighty-two members responded to the survey, an overall response rate of 21.3%. Although 69% of respondents felt there was an adequate service for these higher risk patients, 64% believed that another clinician was undertaking this work. There was no apparent formal patient pathway in 52% of centres, and only 33% of centres maintain a registry of these patients. Tumour block testing for Lynch Syndrome is not usual practice. Many appeared to be unaware of the BSG/ACPGBI UK guidelines for the management of these patients.

Conclusions There is wide variability in local management and in subsequent clinical pathways for hereditary CRC patients. There is a perception that they are being managed by 'another', unspecified clinician. National guidelines are not adhered to. We therefore recommend improved education, well defined pathways and cyclical audit in order to improve care of patients with hereditary CRC risk.