RCP: Unacceptable variations in care for people with inflammatory bowel disease

Tuesday, 27, Mar 2007 12:00

The first national audit of the care of inflammatory bowel disease (IBD) in the UK has shown marked variation in the resources and quality of care. The UK IBD Audit is the first UK-wide audit in gastroenterology and is a collaborative partnership between gastroenterologists (the British Society of Gastroenterology and the Royal College of Physicians), colorectal surgeons (the Association of Coloproctology of Great Britain and Ireland) and patients (the National Association for Colitis and Crohn’s Disease). It is funded by a grant from the Health Foundation.

Inflammatory Bowel Disease affects about 1 in 400 people in the UK. The two main types of IBD are Ulcerative Colitis (UC) and Crohn’s disease (CD) - different disorders, but with a considerable overlap in terms of disability and health service care. Both UC and CD commonly present in adolescence or early adulthood. At least 80% of people with CD and 25% with UC require surgery at some time. There are about 30,000 admissions to hospital per year with exacerbations of IBD and these are associated with some mortality and considerable morbidity. Many deaths occur around the time of surgery.

Seventy five percent of acute hospitals in the UK participated, auditing their resources and individual patient care. The audit revealed:

• 44% of sites in the UK do not have an IBD clinical nurse specialist

• Very poor provision of dietetic services not just for IBD but for gastroenterology as a whole

• Lack of adequate toilet provision in hospitals (for a condition with diarrhoea as a major feature) with a median 4.5 beds per toilet

• Less than 1 in 5 hospitals are able to refer patients directly for psychological support

• Crucial aspects of care are suboptimal; for example only 42% of patients with IBD having a stool sample sent for standard culture and for CDT (clostridium difficile toxin). Only 52% of patients admitted with CD (a disease often associated with weight loss and malnutrition) were weighed and only 37% were seen by a dietitian.

• Many patients with CD are receiving inappropriately prolonged courses of steroids (46% on continuous oral therapy for more than 3 months). Prolonged use of steroid therapy is of no benefit in maintaining remission in CD, increases the risk of septic complications and is associated with an increased mortality

• There is inadequate prophylactic bone protection therapy given for patients on systemic steroids and inadequate screening for osteoporosis

• There seems to be very infrequent participation in clinical research in IBD in the UK

The audit identified good working relationships between medical and surgical teams, and that operations are generally performed by an appropriately experienced specialist surgeon.

Keith Leiper, Consultant Gastroenterologist and Clinical Lead of the IBD Audit said:

‘I am very impressed with the IBD community’s engagement with the UK IBD Audit. There are clear deficits and unacceptable variation in care throughout the UK- both resources and in individual patient management. An expansion in clinical nurse specialists together with improved dietetic services are urgently required together with improved performance in key clinical aspects. There are huge opportunities to improve the care for people with IBD throughout the UK.’

Richard Driscoll, Director of National Association for Colitis and Crohn’s Disease, said:

People who have Colitis and Crohn’s disease have to accept that there is no cure for their illness and live with symptoms of pain, urgent diarrhoea and severe fatigue that can flare-up unpredictably at any time throughout their life. It is essential that they have ongoing support from and quick access to a gastroenterology team that is both experienced in managing these Inflammatory Bowel Diseases and is properly resourced. This national Audit of IBD services is a very important first step in ensuring that services of appropriate quality are available to patients throughout the UK

Jonathan Potter, Clinical Director of the RCP’s Clinical Effectiveness and Evaluation Unit, said:

Ulcerative Colitis (UC) and Crohn’s Disease (CD) are not currently “headline” conditions included in Government targets, National Service Frameworks or national guidelines. The Clinical Effectiveness and Evaluation Unit is particularly pleased, therefore, to be involved in carrying out a national audit of these serious and disabling conditions to ensure that quality of care does not get overlooked. While it is of concern that there are marked variations in the quality of care provided, this exciting project aims to facilitate change and enhance care provision.

Asha Senapati, Consultant Surgeon and ACPGBI representative on the IBD Audit said:

An audit of care jointly provided by physicians and surgeons is unique and highly commendable. It has shown a high level of collaboration between the different specialities and most surgery is done by senior surgeons with the appropriate level of experience. However some of the complex operations, in particular ileoanal pouch surgery, is performed in small numbers in some centres raising the question of whether such surgery should be centralized.

Wendy Buckley, Assistant Director at The Health Foundation, the independent charity which funded the IBD Audit, said:

“An audit of this national scale was urgently needed. The results have revealed some very worrying trends for both patients living with IBD and the healthcare professionals delivering their care. It now gives us a clear and robust view of where the gaps lie between current and best practice. The Health Foundation will continue to support the collaborative partnership. We hope to see real improvements to the quality of clinical care delivered to patients.”