Introduction

This quality standard covers the diagnosis and management of inflammatory bowel disease (Crohn's disease and ulcerative colitis) in adults, children and young people. For more information see the topic overview.

Why this quality standard is needed

The 2 main forms of inflammatory bowel disease are Crohn's disease and ulcerative colitis. Both are chronic diseases that cause inflammation of the digestive system. Crohn's disease typically involves the distal ileum or colon but can occur anywhere in the gastrointestinal tract, whereas ulcerative colitis usually affects the rectum and a variable extent of the colon proximal to the rectum.

In Crohn's disease, inflammation of the digestive system leads to diarrhoea, abdominal pain, tiredness and weight loss. Symptoms of active disease or relapse of ulcerative colitis include bloody diarrhoea, an urgent need to defecate and abdominal pain. People with inflammatory bowel disease can go for long periods with few or no symptoms (this is known as remission), but these can be followed by a period of active disease when symptoms flare up (this is sometimes called a relapse or an exacerbation).

In the UK, it is estimated that at least 115,000 people have Crohn's disease (Crohn's disease NICE guideline CG152, 2012) and around 146,000 have a diagnosis of ulcerative colitis (Ulcerative colitis NICE guideline CG166, 2013). Inflammatory bowel disease can be painful, disrupt normal activities and reduce quality of life, particularly during periods of active disease. It can affect social and psychological wellbeing and increase the person's risk of developing other conditions, such as colorectal cancer, osteoporosis and anaemia. It can also impair growth and pubertal development in children and young people.

The aim when treating inflammatory bowel disease is either to heal the inflammation and so reduce symptoms during a flare‑up ('inducing remission') or to prevent flare‑ups happening in the future ('maintaining remission'). There are various drugs that can help with both of these aims. Choice of drug treatment may include aminosalicylates, corticosteroids and biological drugs for ulcerative colitis, and glucocorticosteroids, aminosalicylates, antibiotics, immunosuppressives and tumour necrosis factor (TNF) alfa inhibitors for Crohn's disease. Surgery may also be an option for some people. Details of treatment options for people with inflammatory bowel disease can be found in Crohn's disease (NICE guideline CG152), ulcerative colitis (NICE guideline CG166) and infliximab, adalimumab and golimumab for treating moderately to severely active ulcerative colitis after the failure of conventional therapy (NICE technology appraisal guidance 329).

The quality standard is expected to contribute to improvements in the following outcomes:

  • attendance at school

  • sickness absence from work

  • unplanned hospital admissions for inflammatory bowel disease

  • length of hospital stay after surgery for inflammatory bowel disease

  • readmissions after surgery for inflammatory bowel disease

  • people with long‑term conditions feeling supported to manage their condition

  • patient experience of services.

How this quality standard supports delivery of outcome frameworks

NICE quality standards are a concise set of prioritised statements designed to drive measurable quality improvements within a particular area of health or care. They are derived from high‑quality guidance, such as that from NICE or other sources accredited by NICE. This quality standard, in conjunction with the guidance on which it is based, should contribute to the improvements outlined in the following 2 outcomes frameworks published by the Department of Health:

Tables 1 and 2 show the outcomes, overarching indicators and improvement areas from the frameworks that the quality standard could contribute to achieving.

Table 1 NHS Outcomes Framework 2015–16

Domain

Overarching indicators and improvement areas

1 Preventing people from dying prematurely

Overarching indicator

1b Life expectancy at 75 (i) Males (ii) Females

Improvement area

1.4 Under 75 mortality rate from cancer*

2 Enhancing quality of life for people with long‑term conditions

Overarching indicator

2 Health‑related quality of life for people with long‑term conditions

Improvement areas

Ensuring people feel supported to manage their condition

2.1 Proportion of people feeling supported to manage their condition

Improving functional ability in people with longterm conditions

2.2 Employment of people with long‑term conditions*

3 Helping people to recover from episodes of ill health or following injury

Overarching indicator

3b Emergency readmissions within 30 days of discharge from hospital*

4 Ensuring that people have a positive experience of care

Overarching indicators

4a Patient experience of primary care (i) GP services

4b Patient experience of hospital care

Improvement areas

Improving people's experience of outpatient care

4.1 Patient experience of outpatient services

Improving hospitals' responsiveness to personal needs

4.2 Responsiveness to in‑patients' personal needs

Improving children and young people's experience of healthcare

4.8 Children and young people's experience of inpatient services

Improving people's experience of integrated care

4.9 People's experience of integrated care

Alignment across the health and social care system

* Indicator shared with Public Health Outcomes Framework

Table 2 Public health outcomes framework for England, 2013–2016

Domain

Objectives and indicators

1 Improving the wider determinants of health

Objective

Improvements against wider factors that affect health and wellbeing and health inequalities

Indicators

1.3 Pupil absence

1.8i Employment for those with long‑term health conditions

1.9 Sickness absence rate

2 Health improvement

Objective

People are helped to live healthy lifestyles, make healthy choices and reduce health inequalities

Indicators

2.23 Self‑reported wellbeing

4 Healthcare public health and preventing premature mortality

Objective

Reduced numbers of people living with preventable ill health and people dying prematurely, while reducing the gap between communities

Indicator

4.5 Under 75 mortality rate from cancer

4.11 Emergency readmissions within 30 days of discharge from hospital

Patient experience and safety issues

Ensuring that care is safe and that people have a positive experience of care is vital in a high‑quality service. It is important to consider these factors when planning and delivering services relevant to inflammatory bowel disease.

NICE has developed guidance and an associated quality standard on patient experience in adult NHS services (see the NICE pathway on patient experience in adult NHS services), which should be considered alongside this quality standard. It specifies that people receiving care should be treated with dignity, have opportunities to discuss their preferences, and be supported to understand their options and make fully informed decisions. It also covers the provision of information to patients and service users. Quality statements on these aspects of patient experience are not usually included in topic‑specific quality standards. However, recommendations in the development source(s) for quality standards that impact on patient experience and are specific to the topic are considered during quality statement development.

Coordinated services

The quality standard for inflammatory bowel disease specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole inflammatory bowel disease care pathway. A person‑centred, integrated approach to providing services is fundamental to delivering high‑quality care to people with inflammatory bowel disease.

The Health and Social Care Act 2012 sets out a clear expectation that the care system should consider NICE quality standards in planning and delivering services, as part of a general duty to secure continuous improvement in quality. Commissioners and providers of health and social care should refer to the library of NICE quality standards when designing high‑quality services. Other quality standards that should also be considered when choosing, commissioning or providing a high‑quality inflammatory bowel disease service are listed in related NICE quality standards.

Training and competencies

The quality standard should be read in the context of national and local guidelines on training and competencies. All healthcare professionals involved in assessing, caring for and treating people with inflammatory bowel disease should have sufficient and appropriate training and competencies to deliver the actions and interventions described in the quality standard. Quality statements on staff training and competency are not usually included in quality standards. However, recommendations in the development source(s) on specific types of training for the topic that exceed standard professional training are considered during quality statement development.

Role of families and carers

Quality standards recognise the important role families and carers have in supporting people with inflammatory bowel disease. If appropriate, healthcare professionals should ensure that family members and carers are involved in the decision‑making process about investigations, treatment and care.