v1 GUIDELINES Gut: first published as 10.1136/gut.2004.043372 on 11 August 2004. Downloaded from Guidelines for the management of inflammatory bowel disease in adults M J Carter, A J Lobo, S P L Travis, on behalf of the IBD Section of the British Society of Gastroenterology ............................................................................................................................... Gut 2004;53(Suppl V):v1–v16. doi: 10.1136/gut.2004.043372 1.0 INTRODUCTION 2.0 SERVICE DELIVERY Ulcerative colitis (UC) and Crohn’s disease (CD) (collectively 2.1 Impact of IBD on patients and society2–4 termed inflammatory bowel disease (IBD)) are complex Patients find symptoms of UC or CD embarrassing and disorders reflected by wide variation in clinical practice. humiliating. IBD can result in loss of education and difficulty These guidelines, commissioned by the Clinical Services’ in gaining employment or insurance. It can also cause Committee of the British Society of Gastroenterology (BSG) psychological problems and growth failure or retarded sexual for clinicians and allied professionals caring for patients with development in young people. Medical treatments such as IBD in the United Kingdom, provide an evidence based corticosteroids or immunosuppressive drugs cause secondary document describing good clinical practice for investigation health problems, and surgery may result in complications and treatment. The guidelines are intended to bring such as impotence or intestinal failure. consistency, but should not necessarily be regarded as the The impact of IBD on society is disproportionately high, as standard of care for all patients. Individual cases must be presentation often occurs at a young age and has the managed on the basis of all clinical data available for that potential to cause lifelong ill health. A hospital serving a case. Patient preferences should be sought and decisions population of 300 000 would typically see 45–90 new cases jointly made between patient and health professional. per annum and have 500 under follow up, but many will be followed up in the community. There is a small increase in 1.1 Development of guidelines mortality for both UC (hazard ratio 1.44, 95% CI 1.31 to 1.58) A comprehensive literature search was performed using and CD (HR 1.73, CI 1.54 to 1.96), largely dependent on age electronic databases (Medline, PubMed, and Ovid; keywords: and distribution of disease. ‘‘inflammatory bowel disease’’, ‘‘ulcerative colitis’’, and http://gut.bmj.com/ ‘‘Crohn’s disease’’) by Dr Carter. A preliminary document 2.2 Approach to care5 was drafted by Dr Carter, Dr Lobo, and contributing authors. It is important to recognise the high calibre of care that can This was summarised by Dr Travis and revised after be delivered in smaller hospitals, because this is greatly circulation first to the committee and then to members of valued by individual patients, but this is dependent on high the IBD section of the BSG, before submission to the Clinical quality training of clinicians working in this environment. Services’ Committee. Larger centres should support district general hospitals through multidisciplinary facilities for managing complex on September 25, 2021 by guest. Protected copyright. 1 1.2 Grading of recommendations IBD. The nature of the symptoms and complexity of IBD The guidelines conform to the North of England evidence mean that facilities are necessary beyond those normally based guidelines development project. The grading of each provided for outpatients or inpatients. Measurable standards recommendation is dependent on the category of evidence of care would assist the process of change in submissions to supporting it: Primary Care Trusts and Strategic Health Authorities. As N Grade A—requires at least one randomised controlled trial there has been little objective research in this area, criteria for as part of a body of literature of overall good quality and standards are proposed, but arbitrary targets avoided: consistency addressing the specific recommendation N Rapid access to clinic appointments for patients with (evidence categories Ia and Ib). symptoms of IBD. N Grade B—requires the availability of clinical studies with- N Rapid access to advice and clinic appointments for patients out randomisation on the topic of consideration (evidence in the event of a relapse. categories IIa, IIb, and III). N Grade C—requires evidence from expert committee reports N Adequate time and space in outpatients and wards to meet or opinions or clinical experience of respected authorities, the unpredictable pattern of disease, allow discussion, in the absence of directly applicable clinical studies of good explanation or counselling, and provide information or quality (evidence category IV). education material. 1.3 Scheduled review of guidelines Abbreviations: 5-ASA, 5-aminosalicylic acid; AZA, azathioprine; CD, The content and evidence base for these guidelines should be Crohn’s disease; CRP, C reactive protein; CsA, cyclosporin; ESR, erythrocyte sedimentation rate; FBC, full blood count; IBD, inflammatory revised within three years of publication, to take account of bowel disease; IFX, infliximab; MP, mercaptopurine; MTX, methotrexate; new evidence. We recommend that these guidelines are NNT, number needed to treat; TPMT, thiopurine methyl transferase; UC, audited and request feedback from all users. ulcerative colitis. www.gutjnl.com v2 Carter, Lobo, Travis N Easy access to private, clean toilet facilities for patients 3.4 Hospital management both as outpatients and as inpatients. Individuals with IBD strongly believe that in addition to the N Administrative and clinical support for different models of above, the following should apply: Gut: first published as 10.1136/gut.2004.043372 on 11 August 2004. Downloaded from care (hospital based, shared care systems with primary N sufficient information to make a rational personal choice care, or patient managed care). about treatment options; N A multidisciplinary team that manages patients with IBD N close integration of medical and surgical management; in hospitals that train specialists in the care of IBD. N straightforward access to support services, including dieticians, psychological support, and social workers; 2.3 Audit N clearly stated management plans on discharge with well The above standards are appropriate topics to audit current defined roles and responsibilities. provision of care. Many other aspects lend themselves to audit, including the availability of patient information, proportion and monitoring of patients on immunomodulator 3.5 Outpatient management therapy, outcome of admission for severe colitis, time lost to Patients consider that the following should be central work, cancer surveillance, or mortality. features: N continuity of care, both in hospital and in primary care. 3.0 THE PATIENT’S PERSPECTIVE AND Patients dislike seeing different individuals at each visit; EXPECTATIONS N a system that allows a choice about appropriate long term 3.1 Understanding the patient’s experience follow up; The following views have been expressed by the membership N direct telephone access; of the National Association for Colitis and Crohn’s Disease. N attention to physical, emotional, and quality of life issues; Patients recognise that desirable goals cannot always be met within resource constraints, but consider that demonstrable N help with problems related to insurance, employment, or efforts should be made to achieve them. social security. N Someone with IBD should be seen as an individual and not be defined by their illness. Recommendation N Individuals differ in the way they choose to live with IBD. Views of ‘‘right’’ and ‘‘wrong’’ approaches to living with 3.5.1 That patient driven criteria be used as one criterion IBD are best avoided. for auditing the quality of care at hospitals treating N Individuals often develop expertise about their own patients with inflammatory bowel diseases. condition and needs which should be respected. N Problems that cannot be solved by the healthcare team are best acknowledged and recognised as being impossible to 4.0 INFLAMMATORY BOWEL DISEASE 6–8 solve, rather than ignored. 4.1 Definitions http://gut.bmj.com/ N Patients place a high value on sympathy, compassion, and Ulcerative colitis is characterised by diffuse mucosal inflam- interest. mation limited to the colon. Disease extent can be broadly N There should be equitable access to treatments and divided into distal and more extensive disease. ‘‘Distal’’ services and early referral of complex cases to specialist disease refers to colitis confined to the rectum (proctitis) or centres when local expertise is exceeded. rectum and sigmoid colon (proctosigmoiditis). More exten- sive disease includes ‘‘left sided colitis’’ (up to the splenic flexure), ‘‘extensive colitis’’ (up to the hepatic flexure), and pancolitis (affecting the whole colon). on September 25, 2021 by guest. Protected copyright. 3.2 Before diagnosis Delay in diagnosis is common and may be accompanied by Crohn’s disease is characterised by patchy, transmural dismissal of symptoms as due to stress. Two objectives would inflammation, which may affect any part of the gastro- improve the situation: intestinal tract. It may be defined by location (terminal ileal, colonic, ileocolic, upper gastrointestinal), or by pattern of N rapid access to hospital investigation; disease (inflammatory, fistulating, or stricturing). These N referral to a hospital that has a gastroenterologist who variables have