Inflammatory Bowel Disease
- The two most common forms of Inflammatory Bowel Disease are Crohn’s Disease and Ulcerative Colitis (UC). Together they affect 1 in every 250 people in the UK giving an estimated population of 240,000. Half of those diagnosed will be in their teens or twenties. These are lifelong conditions as there is no cure.
- The site and severity of disease varies with consequent variation in symptoms. Crohn’s can take a stricturing or fistulising form, and patients often experience different associated inflammatory conditions affecting joints, eyes or skin and for some UC patients schlerosing cholangitis. There is an increased bowel cancer risk, especially for UC patients with extensive disease. Whilst some patients experience Crohn’s as an unremitting continuous disease, the majority of IBD patients experience unpredictable relapses with uncertain periods of remission.
- The primary symptoms of active disease are urgent and frequent diarrhea, abdominal pain and fever and, in small bowel Crohn’s, severe pain when blockages occur due to strictures. Even during remission patients commonly report continuing continence problems, pain and/or profound fatigue.
- There is a low mortality, but high impact on patients’ ability to lead a normal life, with interruptions and limitations to education, work and family roles. Consequently, IBD has a major social and economic impact on society.
- Patients often report an extended period of symptoms and repeated visits to their GP before being referred to hospital and diagnosed with IBD.
- Once diagnosed, they wish to have access to health professionals with specialist knowledge and understanding of IBD and how it affects patients’ lives. They value continuity of care highly, feeling frustration when they have to explain their condition and symptoms to a succession of different doctors. Many wish to discuss the impact of the IBD on their lives, their work and family roles, not just the management of their physical symptoms. They want the discussion to ‘look beyond the next appointment’.
- Patients value highly having access to specialist nurses, who can provide continuity of care and will often take a more holistic approach to the patient’s well-being. The IBD helplines that specialist nurses usually provide are regarded as essential services by patients, giving them quick access back into specialist care.
- Most patients wish to have flexibility in the system of ongoing IBD management so that at different times in their IBD journey they can choose different approaches – when necessary attending hospital regularly, at other times effectively undertaking self-care at home, but with access to a specialist nurse helpline and rapid access back into clinic if required.
- Patients also wish their care to be coordinated with access to the key professionals to discuss important treatment decisions without system-imposed delays. This may be a decision about surgery for IBD after having a discussion with the surgeon and gastroenterologist together, it may be transition from paediatric to adult care, or it may be the management of an associated condition, ensuring that treatment decisions are not made by specialists in isolation.
- Many patients also wish to have access to research trials.
- The majority of patients are managed in secondary care. There has been pressure to discharge patients in ‘stable remission’ to ease new-to-follow up ratios, but most gastroenterologists will keep IBD patients under review because of the unpredictability of the conditions and, in some cases, the need for long-term cancer surveillance. Some patients will therefore be on 12 month review to ensure they have rapid access back into hospital care if needed. Nevertheless, estimates suggest that 20 – 30% of patients with mild to moderate disease may not be in secondary care follow-up and little is known about whether their quality of life is sub-optimal or how many patients may have extensive but quiescent UC and may therefore have a higher risk of bowel cancer.
- Patients are usually treated with a hierarchy of drugs for acute relapses and for maintenance of remission. The most common are aminosalicylates (5-ASA), corticosteroids, immunomodulators and anti-TNF biologics. Medical management of IBD has become more complex in recent years with the use of higher dose 5-ASA for relapses, earlier and more widespread use of immunomodulators and with NICE approval for anti-TNFs for the most severe 10% of Crohn’s patients. A minority of Crohn’s patients may also be offered dietary therapy.
- Surgical intervention ranges from resection of strictures and dealing with fistulas to partial or full colectomy, with most UC patients who have a colectomy being offered an ileo-anal pouch. Colectomy rates in Crohn’s disease have dropped following the introduction of biologic therapies. Crohn’s patients face the likelihood of having surgery and may have repeated resections. UC patients have a likelihood of having surgery.
- For children and adolescents the key issue is pubertal maturity and growth. For this reason most children are managed long-term in a specialist pediatric gastroenterology centre, sometimes with shared care by a pediatrician in a more local hospital. Use of biologic therapies is higher than in adults.
- GPs generally play a minor role in IBD management, particularly with the more specialised use of stronger drugs, and patients not in secondary care follow-up are rarely receiving any form of active management or annual review. Some IBD services have developed protocols for GPs to undertake monitoring of bloods for those patients who are on long-term immunomodulators and this is an effective service for patients and safe provided the protocols are followed.
- NICE Guidelines for Crohn’s and UC are being developed. Medical management is now more complex, as described above, with the aim of achieving mucosal healing. Maintaining bone density and treating anaemia are now seen as important aspects of management. Surgery is increasingly done laporoscopically to minimize scarring and to facilitate accelerated discharge.
- Symptoms such as pain, fatigue and urgency which are very significant factors in patients’ quality of life should be reviewed and actively treated, with support from pain teams and continence nurses where necessary. Psychological support should be provided on a basis similar to services for cancer.
- IBD Standards: National standards for the care of IBD patients have been developed by a collaboration of health professional and patient organizations and these are used as the basis for national audit. (www.ibdstandards.org.uk)
- Integrated care: The IBD Standards aim to provide high quality care for all IBD patients in a given area. To this end they recommend compilation of a Register of all IBD patients, including those not currently in secondary care follow-up, and provision of an annual review for all patients to ensure their IBD is adequately managed and that all appropriate patients are in a cancer surveillance programme.
- Therapeutic blood monitoring: Even with Shared Care protocols, monitoring is haphazard, unreliable and labour intensive. Pathology labs should adapt their IT to automate ordering and choice of tests with central scrutiny of results and instant electronic communication to key individuals (including patients). Development will need coordination with other disciplines.
- Smoking cessation: All patients with Crohn’s disease who smoke regularly should be encouraged to take a smoking cessation programme.
- Shared records: Integrated working requires shared access to essential records. IT departments should facilitate the introduction of web based systems to enable shared entry of and access to data with enough information to enable rapid decision-making. Ideally this will also allow patient access to support self-directed care.
- Surveillance colonoscopy: All patients with ulcerative colitis should undergo colonoscopy by year 10 to establish an appropriate pattern and frequency of colon cancer surveillance. The IBD Register should contain a due date for colonoscopy to ensure all patients are offered this service and avoid preventable deaths. Colonoscopy, with systematic mucosal biopsy, should only be performed by a specialist in IBD colonoscopy to a protocol that usually includes dye spray +/- image enhancement.
- Radiology: IBD patients also die because of cancers due to high cumulative exposure to ionising radiation. Wherever possible radiation based imaging should be replaced by MRI or other methods within five years.
- IBD Audit and Quality Improvement: There is a well-established and HQIP-supported biennial UK IBD Audit with selected individual hospital data being publicly available through NHS Choices from 2011. Alongside the Audit there is a UK-wide Quality Improvement Programme (IBDQIP) These programmes are likely to be combined into a cost-effective subscription based service and commissioners are recommended to require participation by their IBD Service and to support the funding for this.
- Annual heathcare costs were estimated at £720 in 2006; an average £3,000 per patient per year, though this masks the fact that a small proportion of patients with severe disease have much higher annual costs. The overall figure will also now be higher following the NICE recommendation that biologic therapies are cost- effective in 10% of Crohn’s patients.
- The scope for financial savings is modest, but there is considerable opportunity for service improvement and better use of resources leading to higher quality care for patients.
- The main opportunity for saving comes from provision of consistent high quality care to limit unnecessary progression of IBD with consequent active disease requiring more frequent clinical intervention, admissions and surgery. This requires investment in a properly established IBD Service as specified in the IBD Standards.
- Present systems for contracting and funding secondary care have created barriers to the provision of an integrated and flexible IBD Service: for example, ensuring rapid access to the IBD Team means patients are kept in hospital follow-up if re-referral by GPs is required. Similarly, the NHS tariff does not support provision of an IBD specialist nurse helpline or patient education sessions. Specific funding would enable more patients to be managed on supported self-directed care or shared care with their GPs, releasing consultant time and clinic slots for other patients.
- Faecal calprotectin tests should be more widely used:
- by GPs to help them refer suspected IBD patients for investigation
- in monitoring current medical therapies avoiding need for colonoscopy
- specifically in monitoring biologic therapies to assess continuation of therapy or possible trial withdrawal.
- Better value from medicines: There are opportunities to reduce overall medication costs, particularly through choice of 5ASA preparations. However, these are controlled release medicines and therefore prescriptions should not be changed for patients who are in remission without the agreement of clinician and patient since an alteration in the delivery of the active ingredient may increase the risk of a flare-up. The focus of cost saving should be the choice of drugs for new patients.
- Of equal importance to choice of drug is promoting adherence. Evidence shows that a significant proportion of patients do not take their medication as prescribed, whereas trials show that 5ASA does prolong remission and may reduce long-term cancer risk in IBD. This is an additional and important role for IBD nurses.
- GPs should refer possible IBD patients within 3 months from first consultation.
- Secondary care providers should see such patients within a maximum of 4 weeks.
- % of patients in steroid free remission at an annual census point
- (25%/20%/15%) (annual review?) OR % of patients on steroids for less than 3 months as recorded in the IBD Audit
- Proportion of cancers developing in colitis patients that are Dukes B and C (measures failure of surveillance: 25%/17.5%/10%).
- Crohn’s & Colitis Deaths: Too infrequent for statistical analysis but standard is confirmation that each death has been subject to a CEPOD-type review.
Patient reported experience and outcomes:
- Quantitative and qualitative patient evaluations are undertaken and acted on annually
- IBD PROM if and when validated.
Process metrics likely to impact on outcomes (Adherence to IBD Standards) eg:
- Accurate Register of IBD patients (95%/97.5%/100%).
- MDT meeting at least monthly/ twice a month/once a week to discuss all new patients (70%/85%/95%) and patients on biological therapies.
- Participation in national audits including the HQIP supported UK IBD Audit (100%)
- Patient evaluation of access arrangements
Commissioners should also consider additional quality indicators based on the wide range of Areas for Improvement in the NHS Outcomes Framework in order to encourage the patient-centred approach that we consider important in chronic diseases. These areas (numbered according to Outcomes framework) include
- 2.1 Proportion of people feeling supported to manage their condition
- 2.2 Employment of people with long-term conditions
- 2.4 Health related quality of life for carers
Key characteristics of IBD requiring social policy attention:
- IBD affects young people at crucial stages of their lives, interrupting and often limiting educational achievement at school and in further education, and creating barriers to getting started in work. A recent study showed that older teenagers were already limiting their career aspirations, perhaps unnecessarily.
- IBD patients in work would significantly benefit from greater employer understanding and practical support, for example flexible starting times to accommodate mornings when the need to use the toilet has made them late, or being given a work station near a toilet at work.
- IBD patients often find it difficult to meet the eligibility criteria for benefits because the nature of IBD as a fluctuating and unpredictable condition does not fit the customary model of a steady-state or deteriorating long-term condition.
- IBD patients need better understanding and recognition of urgency as a symptom. Assessment of continence in state benefits often does not recognize the impact of urgency and the limitations it can impose on daily life. There is a need for some system to allow patients to park urgently at crucial moments (blue badge or equivalent),also better provision of public toilets (perhaps through an extensive community toilets scheme).
- ECCP guidelines on IBD: www.ecco-ibd.eu/index.php/publications/ecco-guidelines
- BSG guidelines on IBD http://www.bsg.org.uk/clinical-guidelines/ibd/guidelines-for-the-management-of-inflammatory.html
- National IBD Standards www.ibdstandards.org.uk
- Information on the audit of IBD: www.rcplondon.ac.uk/resources/inflammatory-bowel-disease-audit