Campaigns, Family History of Bowel Cancer?, Information for Health Professionals, Lynch Syndrome, Press Releases, Research Studies, West Middlesex University Hospital

A national survey of hereditary colorectal cancer services in the United Kingdom


Autosomal dominant pedigree chart. In Autosoma...

A new study has just been published in the journal Frontline Gastroenterology.  This shows a highly inconsistent approach to the management of patients at elevated risk of hereditary colorectal cancer (CRC) in the United Kingdom (UK). 

The British Society of Gastroenterology (BSG) Cancer Group designed a national survey to determine how we might understand and improve the service for these patients.

What is already known on this topic? Genetic factors contribute about 35% of all colorectal cancer (CRC) risk.  There is good evidence that the correct management of patients with an elevated hereditary risk is a highly effective method of preventing CRC.  This can be achieved by screening according to guidelines and the development of a high quality service with clear patient pathways.  However in some studies there is evidence of an inconsistent approach to the management of those patients, with low risk patients being screened too often, and high risk patients not frequently enough.  There is also a low referral rate to genetic services for high risk patients.

What this study adds? Responses to this national survey suggest a poor understanding of the current guidelines amongst clinicians and variable clinical pathways for patients.  There is also a perception that another unspecified clinician is undertaking this work.  This may explain the wide variation in care and low adherence to guidelines in the United Kingdom (UK).

How might it impact on clinical practice in the foreseeable future? We recommend the development of clear structures and the provision of a high quality service to these patients through national audit, development of quality standards and education of physicians and surgeons in the UK.  Each hospital should develop a lead clinician for the delivery of these services.  Only in this way will this ad hoc approach to the management of hereditary CRC be improved.

Study Reference: Kevin Monahan & Susan Clark.  Frontline Gastroenterology. 2013 Online First

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.

Advertisements

About kjmonahan

Service lead for Family History of Bowel Cancer Clinic

Discussion

Trackbacks/Pingbacks

  1. Pingback: Lynch Syndrome in Ireland | The Family History of Bowel Cancer Clinic - October 25, 2013

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 1,302 other followers

Live twitter feed

RSS CRUK Bowel Cancer Blog

  • An error has occurred; the feed is probably down. Try again later.

RSS Familial Cancer

  • An error has occurred; the feed is probably down. Try again later.

Categories

Google Plus

%d bloggers like this: