Why is it important?
The right care at the right time—for patients in clinical remission, this is an essential element of living with IBD safely. It’s the best way to ensure the condition doesn’t have a major impact on their daily lives. And it’s the main mechanism through which health promotion can be delivered.
Routine review should be personalised. This means that patients, carers and families can identify themes and raise issues that are important to them.
It’s important that routine reviews include:
- Symptom assessment and disease control
- Medication review, including effectiveness, patient experience and adherence and therapeutic monitoring using agreed protocols
- Review of long-term complication risk factors, such as colorectal cancer surveillance, smoking and osteoporosis
- Wellbeing and emotional support needs
- Identification and discussion of commonly identified ongoing issues for patients, even when in remission, such as diet, fertility and pregnancy, travelling with IBD, frailty and concurrent medications, continence concerns, fatigue and ongoing pain. Ideally, this should be in the context of a structured care plan.
- Discussion about relapse prevention and what to do in a flare.
- Clear, documented agreements about when the next investigation, blood test or review is planned.
How and when to conduct a routine review should be agreed jointly with patients, families and carers when you speak to them (whether by telephone or face-to-face consultation). Each patient is different and follow-up options should be personalised to meet their individual needs.
All patients should have access to supported self-management and Patient Initiated Follow-Up pathways (PIFU). Patient‑Initiated Follow‑Up (PIFU) allows patients to book their own follow‑up appointments only when they need them, based on symptoms or concerns, instead of attending routine scheduled reviews. It gives people more control, reduces unnecessary appointments, and still ensures quick access to specialist support when required.
Reviews by IBD Nurse Specialists in advanced nursing roles are beneficial and well received by patients.
For patients requiring routine monitoring, telephone or virtual clinics are a recommended, convenient option.
Patients with IBD have an increased risk of bowel cancer, particularly those with more extensive or active disease. The risk of developing colorectal cancer for people with Ulcerative Colitis is estimated as 2% after 10 years, 8% after 20 years and 18% after 30 years of disease. The risk of developing colorectal cancer for people with Crohn's Disease is similar to that for patients with Ulcerative Colitis with the same extent of colonic involvement.
For patients with Ulcerative Colitis or Crohn's Colitis involving more than one segment of colon, surveillance should begin 10 years after diagnosis and be repeated every 3-5 years unless there are specific risk factors. These include primary sclerosing cholangitis or a strong family history of colorectal cancer. It is important that a mechanism is in place to ensure that colorectal cancer surveillance is carried out in line with national guidance and that patients and parent/carers are aware of the process and their individual risk factors.