Inflammatory bowel disease

Structure

Evidence that services provide age‑appropriate support from a multidisciplinary team for people with inflammatory bowel disease, and their family members or carers.

Data source: Local data collection. Data on patient support and the inflammatory bowel disease team are available in the National audit of inflammatory bowel disease (IBD) service provision, sections 2 and 3, and the National audit of paediatric inflammatory bowel disease (IBD) service provision, sections 2 and 3.

Process

a) Proportion of people with inflammatory bowel disease where there is a documented discussion about their needs, and the needs of their family members or carers (if appropriate), for age‑appropriate support from a multidisciplinary team.

Numerator – the number in the denominator where there is a documented discussion about their needs, and the needs of their family members or carers (if appropriate), for age‑appropriate support from a multidisciplinary team.

Denominator – the number of people with inflammatory bowel disease.

Data source: Local data collection. Contained within the Royal College of Physicians' National clinical audit of inpatient care for adults with ulcerative colitis.

b) Proportion of people with inflammatory bowel disease whose needs, and the needs of their family members or carers (if appropriate), for age‑appropriate support from a multidisciplinary team are met.

Numerator – the number in the denominator whose needs, and the needs of their family members or carers (if appropriate), for age‑appropriate support from a multidisciplinary team are met.

Denominator – the number of people with inflammatory bowel disease whose needs for age‑appropriate support from a multidisciplinary team are recorded.

Data source: Local data collection.

Outcome

a) Satisfaction of people with inflammatory bowel disease with the support provided.

Data source: Local data collection. The IBD inpatient experience audit asks various questions about patient experience of support in hospital.

b) Satisfaction of family members or carers of people with inflammatory bowel disease with the support provided.

Data source: Local data collection.

Age-appropriate support

Age‑appropriate support should be broad‑based and offered by those who are best placed at the time to meet the needs of people with inflammatory bowel disease and their family members or carers. A person's support needs will vary depending on age. For example, a child or young person's concerns might be more focused on body image, transition between services and attending school and higher education, whereas an adult might be more concerned with employment and sexual issues. Other issues for which people may need support include concerns about the disease and its treatment, nutrition and diet, and other aspects of living with a chronic illness. Support could include signposting to reliable and accurate information on a broad range of topics or having access to a dedicated telephone or email service where people can raise concerns or questions. [Adapted from NICE's guideline on Crohn's disease and IBD UK's IBD standards, statement 7.1]

Multidisciplinary team

An inflammatory bowel disease (IBD) multidisciplinary team should comprise a gastroenterologist, colorectal surgeon, IBD specialist nurse, dietitian allocated to gastroenterology, pharmacist, histopathologist and radiologist, all with expertise in IBD. The team should have access to advice for decisions about specific patients from a stoma nurse, paediatric gastroenterologist, hepatologist, oral medicine, nutrition support team, psychologist, primary care physician, ophthalmologist, rheumatologist, dermatologist, obstetrician and social worker. There should be a designated coordinator for the IBD team. [Adapted from BSG consensus guidelines on the management of inflammatory bowel disease in adults, section 6.1 and good practice recommendation 27]