Dr Kevin Barrett reviews the 2019 inflammatory bowel disease guideline from the British Society of Gastroenterology, and distils essential information for primary care
Read this article to learn more about:
- using faecal calprotectin as a biomarker for mucosal inflammation
- what information needs to be exchanged between primary and secondary care to ensure good care for people with inflammatory bowel disease
- providing ongoing management, mental health support, and colorectal cancer surveillance.
The term ‘inflammatory bowel disease’ (IBD) is primarily used to describe two conditions: Crohn’s disease and ulcerative colitis (UC). Crohn’s disease and UC are chronic conditions centred around inflammation of the gut, and collectively affect around 500,000 people in the UK.1,2 The symptoms of IBD relapse and remit, and extraintestinal symptoms can also occur in the joints, skin, eyes, and liver. Currently, there is no cure for IBD, and treatment is focused on achieving and maintaining remission. IBD can have a significant impact on quality of life, leisure activities, and performance at work.3
Ulcerative colitis is characterised by a single area of mucosal inflammation starting in the rectum and extending proximally for a variable distance. Up to 90% of people with UC will experience one or more relapses after the first attack, and early relapse or active disease in the first 2 years is associated with a worse disease course subsequently.4
There is no single unifying definition of Crohn’s disease: any part of the digestive system from the mouth to the anus can be affected, and mucosal biopsies show patchy inflammation.4
In 5–15% of patients with IBD, endoscopic and histological assessments cannot distinguish between Crohn’s disease and UC. This is called IBD-unclassified (IBD-U), or indeterminate colitis. IBD-U is more common in children than adults.4
Suspecting IBD, and investigating, managing, and supporting patients with IBD can be complex and often requires a multidisciplinary approach. GPs can feel isolated and deskilled because communication between primary and secondary care can be fragmented. However, GPs still have a key holistic role, particularly in investigating and managing associated symptoms, managing contraception and vaccination, and supporting patients’ educational, occupational, and psychological needs.
In June 2019, the British Society of Gastroenterology (BSG) released the latest revision to its Consensus guidelines on the management of inflammatory bowel disease in adults,4 which is due to be published in the journal Gut later this year. A PDF of the accepted manuscript is available on the BSG website.4
Since the previous iteration of the BSG IBD guideline,5 published in 2011, there have been updates to NICE guidance on Crohn’s disease,6 ulcerative colitis,7 and suspected cancer,8 as well as the 2019 IBD UK Standards.9 The latest revision of the BSG guidance reflects major advances in investigations and interventions for both UC and Crohn’s disease. The evidence for the use of biologic medication has progressed and these drugs are being used at an earlier stage of disease. Calprotectin testing in primary care is also more widely available than it was in 2011.
At nearly 70,000 words, the 2019 BSG IBD guideline is very comprehensive. Much of the content (which includes statements, tables, boxes, figures, and recommendations) is only applicable to secondary care, but there are aspects of the guideline that are relevant to primary care, including:
- Flare management and prevention of corticosteroid-induced osteoporosis
- Ongoing medical management
- Supporting patients
- Investigation of other symptoms
- Colorectal cancer surveillance and prevention.
This article aims to cover these sections relevant to primary care.
The 2019 BSG guideline suggests that a faecal calprotectin measurement may be used to provide evidence of mucosal inflammation in patients with IBD where it is unclear whether symptoms are due to ongoing inflammation or other non-inflammatory causes (such as bile acid malabsorption, functional bowel disorder, or short bowel).4
NICE Diagnostic Guideline 11 on Faecal calprotectin diagnostic tests for inflammatory diseases of the bowel10 contains a pathway for investigating patients presenting to primary care with persistent lower gastrointestinal symptoms. It guides clinicians towards an urgent referral where appropriate, then towards blood tests to exclude anaemia, infection, inflammation, and coeliac disease. Where these tests are negative, the use of faecal calprotectin testing is recommended, and the pathway (see Figure 6: Use of faecal calprotectin in primary care in the BSG IBD guideline) follows the same process to interpret, refer, or re-test as needed.4 Note that the cut-off values for normal calprotectin have been updated since the 2016 Guidelines in Practice article, A multidisciplinary approach is key to best treatment of IBD.11
2. Flare management and prevention of corticosteroid-induced osteoporosis
The management of flares in primary care can be difficult as there is sometimes little correlation between symptoms and active inflammation. Calprotectin levels, however, do reflect the level of mucosal inflammation in most patients and these can be used as a marker of disease activity.12
To help reduce burden on community clinic and hospital services, the BSG guideline recommends establishing a dedicated IBD telephone line or email service for patients and primary care physicians. This will allow the provision of timely advice and care, particularly during times of relapse, and specialist support for managing medications or treatment side-effects.4
Patients should also be provided with a personalised care plan, and primary care should be given a minimum set of information from secondary care (and vice versa) to guide the escalation or initiation of treatments, but this will not be commonplace for some time.
The following information should be included in correspondence from secondary to primary care:4
- main diagnosis/diagnoses (including the type and location of IBD, and the date of diagnosis)
- date(s) of surgery
- secondary diagnosis/diagnoses (for example, anaemia, vitamin D deficiency, osteoporosis, extraintestinal manifestations)
- date of last endoscopy with findings and timing of next planned endoscopy
- date of next planned contact with secondary care
- current medical therapy (including any previous treatments with thiopurines, methotrexate, or biologics and reasons for discontinuation)
- recommended length of current medical therapy
- treatment recommendations in case of a flare (5-ASA dose increase, prednisolone, budesonide, calcium, and vitamin D, and details of who to contact if treatment is initiated in primary care)
- contact details for the local IBD team
- weblink for advice and guidance for primary care (for example, the Royal College of General Practitioners [RCGP] Spotlight Project toolkit).
The following information should be included in correspondence from primary to secondary care:4
- date of last prescription issued
- all current and recent medications, including any recent antibiotics
- number of courses of oral prednisolone issued in the last 12 months
- key results of last blood tests
- functional impact (e.g. impact of IBD on employment, family, and social functioning)
- any newly diagnosed co-morbidities.
Access to IBD service advice lines varies across the UK and specialist opinions from IBD nurses and gastroenterologists can take time. The RCGP and Crohn’s & Colitis UK have co-developed a set of flare management pathways which have been endorsed by the Primary Care Society for Gastroenterology and the BSG. The pathways may be used by clinicians to help decide on appropriate treatment for patients with established, uncomplicated IBD when advice from secondary care is hard to obtain. The pathways are available to download from the RCGP IBD toolkit.
Osteoporosis is a concern for many patients with IBD and can be caused by:4
- the combination of malabsorption of calcium and vitamin D because of small bowel disease and/or a rapid bowel transit time
- the avoidance of dairy products as these may be associated with IBS-type symptoms
- the presence of active inflammation
- the use of prolonged courses of oral steroid medication.
The BSG guideline recommends that all people with IBD who have started treatment with oral corticosteroids for a flare should have a sufficient intake of calcium (800–1000 mg/day) and vitamin D (800 IU/day). The BSG guideline includes a pathway that provides advice that can help primary care decide when bisphosphonates should be prescribed or a fracture risk assessment carried out (see Figure 5: Osteoporosis prevention and management in IBD in the BSG IBD guideline).4
3. Ongoing medical management
Shared care arrangements can be the subject of controversy in primary care. The need for additional monitoring for medications used in IBD can be time-consuming, and the pathway to seek advice in the event of abnormal blood tests or reactions can be lacking. However, where relevant resources and pathways exist, it is appropriate for primary care to be involved in the monitoring of the straightforward medications used to treat IBD (e.g. mesalazine, thiopurines, and methotrexate, once patients are in remission on a stable dose). This does not currently apply to patients prescribed biologics or biosimilar medication, and these are best left to the secondary care team. Primary care physicians should arrange monitoring blood tests, relevant vaccinations, and encourage treatment adherence, supported by regular communication with secondary care.4
Communication between primary and secondary care is an area with scope for improvement; as described under point 2, getting the right information shared between healthcare sectors is essential to managing flares and preventing treatment-related side-effects—as well as ensuring both clinicians and patients have a good understanding of the diagnosis and treatment of IBD. Primary care has a key role to play in encouraging adherence to medication to reduce the risk of flares13 and the risk of colorectal carcinoma.14 The BSG recommends that practitioners routinely ask patients about medication adherence; risk factors for poor adherence include young age, psychological distress, patient beliefs, and discordance between patient and health professional. Compliance can be improved in patients prescribed maintenance doses of 5-aminosalicylic acid (ASA) by once-daily dosing and this is something that should be considered in primary care.4,15
Patients with UC receiving treatment with 5-ASA should be monitored for the development of nephrotoxicity, with baseline renal function tests repeated after 2–3 months, and then annually.4
Primary care professionals should also encourage smoking cessation in all patients with IBD who smoke. Practitioners should warn patients that there is an increased risk of flare after stopping, which may require an increase in medication to control the disease.4 However, patients should be reminded that the benefits of smoking cessation outweigh any potential decrease in flare activity from smoking. Interestingly, a paper published in August 2019 concluded that smoking cessation was not associated with worse disease course, and that smokers and never-smokers with UC have similar outcomes with respect to flares.16 Crohn’s & Colitis UK have a useful patient information sheet explaining the relationship between smoking and IBD, and ways to help give up smoking.
4. Supporting patients
Depression and anxiety are more common than would be expected by chance in patients with IBD, mediated partly through the inflammatory process, and partly because many patients are diagnosed with a chronic relapsing-remitting disease at a key stage of life.17 Primary care should offer a variety of measures to support patients, including referrals to cognitive behavioural therapy and psychological services (see a case study on psychological support service for patients with IBD), and recommend voluntary organisation support such as Crohn’s & Colitis UK’s emotional wellbeing service. A healthy lifestyle and regular physical activity can have benefits for patients with IBD and this should be recommended wherever possible.4,18
Patients with IBD who wish to participate in guided self-management should be provided with education sessions and written or electronic personalised information about their management, with ongoing support and access to the IBD service in the event of relapse.4
5. Investigation of other symptoms
Although the majority of care for patients with IBD is currently led by the secondary care team, patients often present to primary care with associated symptoms such as fatigue and pain. Both of these can be unrelated to disease activity, and a structured approach to investigation is required.
If a patient with IBD presents to primary care with fatigue, they should be investigated for subclinical disease activity, and consideration should be given to other potentially modifiable factors such as sleep pattern, medication side-effects, anaemia, iron deficiency, electrolyte disturbance, thyroid dysfunction, vitamin D and B12 deficiency, and psychological symptoms.4
The 2019 BSG guideline provides a list of blood tests (full blood count, urea and electrolytes, and C-reative protein) that could be carried out, and advises to consider and treat psychological symptoms once underlying abnormal physiology has been excluded. Opioid medication does not have a place in the long-term management of IBD and so should be discouraged.4
A planned pregnancy is safer than an unplanned pregnancy in IBD; therefore, as soon as a woman with IBD announces she is considering starting to try for a baby, in addition to the usual pre-conception advice regarding vaccinations, smoking cessation, diet, and taking folic acid, she should be referred to the local IBD service. Indeed, some units have a dedicated IBD-related antenatal service. Crohn’s & Colitis UK have developed a patient information sheet on pregnancy and IBD, which aims to answer some of the most commonly asked questions.
For most women, the risks to the fetus from having a flare in pregnancy outweigh the risk from the medication they are taking, with the notable exception of methotrexate.
Methotrexate is one area where the 2019 BSG IBD guideline differs in opinion from other guidance. According to the British National Formulary entry for methotrexate, the ‘Manufacturer advises effective contraception during and for at least 6 months after treatment in men and women’.19 However, several studies have shown that there is no harm to the fetus if conception happens while the father is taking methotrexate and that the risks of major malformations, stillbirths, and preterm labour are the same as in the unexposed population.20 Therefore, the BSG suggests that men may not need to discontinue treatment prior to conception.4
If a women does become pregnant while taking methotrexate then the drug should be discontinued and high-dose folic acid (15 mg daily) provided for at least 6 weeks.4
The BSG recommends that patients with IBD who are receiving immunomodulators or biologics should have the influenza vaccination each autumn, and pneumococcal vaccination with a booster after 5 years.4
The ‘Green Book’ provides comprehensive advice for primary care regarding the immunisation of patients with IBD. Live vaccinations in particular can cause problems for patients on high doses of immunosuppressive therapy;4,21 because live vaccines replicate after administration, individuals who have received a live vaccine should wait until their immune response has been established to receive immunosuppressive therapy. For most viral live vaccines, a period of up to 4 weeks should be sufficient. The decision to treat earlier where clinically necessary should be made by secondary care.21 Box 1 provides information on live vaccines and immunosuppressive therapy.
Immunisation with live vaccines should be delayed until 6 months of age in children born to mothers who received immunosuppressive biological therapy during pregnancy. In practice, this means that these children will not be eligible to receive rotavirus vaccine (and will need to defer Bacillus Calmette–Guérin [BCG], if indicated, for 6 months). If there is any doubt as to whether an infant due to receive a live attenuated vaccine may be immunosuppressed due to the mother’s therapy, including exposure through breast-feeding, advice from secondary care should be sought.21
It is important to document all hospital-issued medication on the patient’s electronic medical record so that these issues can be picked up before the vaccination is given.
Box 1: Information on live vaccines and immunosuppressive therapy21
Live vaccines currently available in the UK are:
- live influenza vaccine (Fluenz Tetra)
- measles, mumps and rubella vaccine (Priorix, MMRVaxPro)
- rotavirus vaccine (Rotarix)
- shingles vaccine (Zostavax)
- BCG vaccine
- oral typhoid vaccine (Ty21a)
- varicella vaccine (Varilrix, Varilvax)
- yellow fever vaccine
Live vaccines should not be administered to individuals on immunosuppressive therapy including:
- those who are receiving, or have received in the past 6 months, immunosuppressive chemotherapy or radiotherapy for malignant disease or non-malignant disorders
- those who are receiving, or have received in the past 6 months, immunosuppressive therapy for a solid organ transplant (with exceptions, depending upon the type of transplant and the immune status of the patient)
- those who are receiving or have received in the past 12 months immunosuppressive biological therapy (e.g. anti-TNF therapy such as alemtuzumab, ofatumumab, and rituximab) unless otherwise directed by a specialist
- those who are receiving or have received in the past 3 months immunosuppressive therapy including:
- adults and children on high-dose corticosteroids (>40 mg prednisolone per day or 2 mg/kg/day in children under 20 kg) for more than 1 week
- adults and children on lower dose corticosteroids (>20 mg prednisolone per day or 1 mg/kg/day in children under 20 kg) for more than 14 days
- adults on non-biological oral immune modulating drugs e.g. methotrexate >25 mg per week, azathioprine >3.0 mg/kg/day or 6-mercaptopurine >1.5 mg/kg/day
- for children on non-biological oral immune modulating drugs (except those on low doses), specialist advice should be sought prior to vaccination.
MMR=measles, mumps, and rubella; BCG=Bacillus Calmette–Guérin; TNF=tumour necrosis factor
Public Health England. Contraindications and special considerations: the green book, chapter 6. PHE 2017. Available at: gov.uk/government/publications/contraindications-and-special-considerations-the-green-book-chapter-6
Contains public sector information licensed under the Open Government Licence v3.0
8. Colorectal cancer surveillance and prevention
Patients with IBD have an increased risk of developing colorectal cancer. The average risk is estimated at 18% in patients 30 years after being diagnosed with UC.22 The BSG IBD guideline development group discussed the reduction in cancer risk by long-term compliance with medication—one study concluded that colorectal cancer risk in people with UC can be reduced by regular therapy with 5-ASA medication.15 However, there is not yet enough evidence to state how long regular therapy with 5-ASA is necessary, so the consensus is that if mucosal inflammation recurs after stopping medication then the medication should be re-started.4
Practitioners should advise patients with ulcerative colitis or unclassified IBD with left-sided or more extensive disease to take at least 2 g of mesalazine daily to reduce the risk of colorectal cancer.4
NICE Clinical Guideline 118 on colorectal cancer prevention22 differs from the BSG IBD guideline in that the former states that colonoscopic surveillance should start 10 years after diagnosis, but this has been reduced to 8 years in the BSG guideline. In the case of primary sclerosing cholangitis, surveillance should begin from diagnosis.4 Colonoscopic surveillance should be scheduled by secondary care, but primary care should be mindful of patients who may have moved area, missed appointments, or become lost to follow up for other reasons.
The 2019 BSG IBD guideline is a comprehensive document covering almost all aspects of care for patients with suspected and diagnosed IBD. The recommendations align with the 2019 IBD UK Standards,9 which set out what high-quality care looks like at every point of the patient journey. The multi-disciplinary approach to tackling the disease is reflected by the heavy involvement of primary care in the guideline. This should help strengthen the relationship between primary and secondary care and ultimately provide an improved experience of care for people with IBD.
Dr Kevin Barrett
GP Partner at New Road Surgery
Chair of the Primary Care Society for Gastroenterology
RCGP and Crohn’s & Colitis UK Spotlight Project Lead Clinical Champion
Top tips for primary care
- Calprotectin is an important test to help differentiate between IBD and IBS in primary care. Diagnosis of IBD should only be made in secondary care after further investigations have been carried out
- Once-daily dosing for 5-ASA therapy can aid compliance. Long-term usage should be encouraged as it reduces the risk of flares and colorectal cancer
- Add all hospital-issued medication to the primary care electronic patient record so that adverse drug interactions can be detected and help ensure that live vaccinations are not given to immunosuppressed patients
- Annual renal function testing is required for patients on 5-ASAs. DMARDs require more intensive monitoring according to local shared-care protocols
- Screening for colorectal carcinoma should start 8 years after diagnosis of IBD
- Ensure patients have an adequate intake of calcium and vitamin D every time oral steroids are prescribed
- Seek advice from the IBD advice lines if a flare is suspected in a patient with IBD, or use the RCGP/Crohn’s & Colitis UK, PCSG, and BSG-endorsed flare pathways if advice cannot be accessed in a timely manner
- Information and support is available for patients at www.crohnsandcolitis.org.uk and for primary care practitioners at www.rcgp.org.uk/ibd
- Consider a diagnosis of colorectal carcinoma in patients with IBD whose symptoms are different to normal or do not respond to treatment. Ensure that patients have been risk stratified 8 years after initial diagnosis.
IBD=inflammatory bowel disease; IBS=irritable bowel syndrome; 5-ASA=5-aminosalicylic acid; DMARD=disease-modifying antirheumatic drug; RCGP=Royal College of General Practitioners; PCSG=Primary Care Society for Gastroenterology; BSG=British Society of Gastroenterology
Implementation actions for STPs and ICSs
written by Dr David Jenner, GP, Cullompton, Devon
The following implementation actions are designed to support STPs and ICSs with the challenges involved with implementing new guidance at a system level. Our aim is to help you consider how to deliver improvements to healthcare within the available resources.
- Conduct a baseline assessment of local ICS/STP care pathways for the management of IBD against the BSG guideline to establish whether the recommendations are being met locally
- Consider establishing a local dedicated website/webpage for both GPs and patients to refer to, where details of all local pathways, advice phone lines, or any other relevant resources can be located
- Invite local GP practices to establish IBD registers in house by searching on diagnosis and treatment codes and, with patient consent, sharing this with local specialist services to ensure all patients are recognised and receive appropriate follow up and surveillance
- Check all patients with a diagnosis of IBD have received the appropriate vaccinations and have a bone mineral density assessment on a regular basis
- Ensure there are clear local shared-care guidelines for the prescription and monitoring of specialist medication, if this is delegated to primary care.
STP=sustainability and transformation partnership; ICS=integrated care system; IBD=inflammatory bowel disease; BSG=British Society for Gastroenterology
- Hamilton B, Heerasing N, Hendy P et al. Prevalence and phenotype of IBD across primary and secondary care: implications for colorectal cancer surveillance. Gut 2018; 67 (Suppl 1): A67.
- Jones G, Lyons M, Plevris N et al. Multi-parameter datasets are required to identify the true prevalence of IBD: The Lothian IBD Registry (LIBDR). J Crohns Colitis 2019; 13: S082–S083.
- Rowse G, Hollobone S, Afhim S, Oliver P. Factors associated with life satisfaction in people with Crohn’s Disease and ulcerative colitis: results from the national 2018 Crohn’s & Colitis UK Inflammatory Bowel Disease Quality of Life Survey. J Crohns Colitis 2019; 13: S042–S043.
- Lamb C, Kennedy N, Raine T et al (2019). British Society of Gastroenterology consensus guidelines on the management of inflammatory bowel disease in adults. Gut, in press. Available at: www.bsg.org.uk/resource/bsg-consensus-guidelines-ibd-in-adults.html (accessed 27 Aug 2019).
- Mowat C, Cole A, Windsor A et al. Guidelines for the management of inflammatory bowel disease in adults. Gut 2011; 60: 571–607.
- NICE. Crohn’s Disease: management. NICE Guideline 129. NICE, 2019. Available at: nice.org.uk/ng129
- NICE. Ulcerative colitis: management. NICE Guideline 130. NICE, 2019. Available at: nice.org.uk/ng130
- NICE. Suspected cancer: recognition and referral. NICE Guideline 12. NICE, 2017. Available at: nice.org.uk/ng12
- Kapasi R, Glatter J, Lamb C et al. Consensus standards of healthcare for adults and children with inflammatory bowel disease in the UK. Frontline Gastroenterology. Published online first 24 July 2019. doi: 10.1136/flgastro-2019-101260
- NICE. Faecal calprotectin diagnostic tests for inflammatory diseases of the bowel. NICE Diagnostics guidance 11. NICE, 2013. Available at: nice.org.uk/dg11
- Barrett K. A multidisciplinary approach is key to best treatment of IBD. Guidelines in Practice 2016; 19 (9): 11–24. Available at: www.guidelinesinpractice.co.uk/gastrointestinal/a-multidisciplinary-approach-is-key-to-best-treatment-of-ibd/352837.article (accessed 6 August 2019).
- Derwa Y, Williams C, Sood R et al. Factors affecting clinical decision-making in inflammatory bowel disease and the role of point-of-care calprotectin. Ther Adv Gastroenterol 2018; 11: 1–18.
- Kane S, Huo D, Aikens J, Hanauer S. Medication nonadherence and the outcomes of patients with quiescent ulcerative colitis. American J Med 2003; 114 (1): 39–43.
- Eaden J, Abrams K, Ekbom A et al. Colorectal cancer prevention in ulcerative colitis: a case-control study. Aliment Pharmacol Ther 2000; 14: 145–153.
- Qiu X, Ma J, Wang K, Zhang H. Chemopreventive effects of 5-aminosalicylic acid on inflammatory bowel disease-associated colorectal cancer and dysplasia: a systematic review with meta-analysis. Oncotarget 2017; 8 (1): 1031–1045.
- Blackwell J, Saxena S, Alexakis C et al. The impact of smoking and smoking cessation on disease outcomes in ulcerative colitis: a nationwide population-based study. Aliment Pharmacol Ther 2019; 50 (5): 556–567.
- Kurina L, Goldacre M, Yeates D et al. Depression and anxiety in people with inflammatory bowel disease. J Epidemiol Community Health 2001; 55: 716–720.
- Tew G, Leighton D, Carpenter R et al. High-intensity interval training and moderate-intensity continuous training in adults with Crohn’s Disease: a pilot randomised controlled trial. BMC Gastroenterol 2019; 19: 19.
- NICE. Methotrexate. British National Formulary. bnf.nice.org.uk/drug/methotrexate.html (accessed 6 August 2019).
- Eck L, Jensen T, Mastrogiannis D et al. Risk of adverse pregnancy outcome after paternal exposure to methotrexate within 90 days before pregnancy. Obstet Gynecol 2017; 129 (4): 707–714.
- Public Health England. Contraindications and special considerations: the green book, chapter 6. PHE, 2017. Available at: gov.uk/government/publications/contraindications-and-special-considerations-the-green-book-chapter-6
- NICE. Colorectal cancer prevention: colonoscopic surveillance in adults with ulcerative colitis, Crohn’s disease or adenomas. Clinical Guideline 118. NICE, 2011. Available at: nice.org.uk/cg118.