Introduction

This quality standard covers the recognition, assessment and management of coeliac disease in children, young people and adults. For more information, see the coeliac disease topic overview.

NICE quality standards focus on aspects of health and social care that are commissioned locally. Areas of national policy, such as food labelling, are therefore not covered by this quality standard.

Why this quality standard is needed

Coeliac disease is an autoimmune condition associated with chronic inflammation of the small intestine, which can lead to malabsorption of nutrients. It is a common condition and population screening studies suggest that in the UK, 1 in 100 people are affected. The complications of coeliac disease (which may or may not be present at diagnosis) can include osteoporosis, ulcerative jejunitis, malignancy (intestinal lymphoma), functional hyposplenism, vitamin D deficiency and iron deficiency.

Coeliac disease is underdiagnosed, particularly when people present in primary care and other non-specialist settings. Delayed diagnosis is a concern because of the possible long‑term complications of undiagnosed coeliac disease. People with conditions such as type 1 diabetes, autoimmune thyroid disease, Down's syndrome and Turner syndrome are at a higher risk than the general population of having coeliac disease. First‑degree relatives of a person with coeliac disease also have an increased likelihood of having coeliac disease.

The main treatment for coeliac disease is a lifelong gluten‑free diet. Most people report a rapid clinical improvement after starting a gluten‑free diet. Specific education and information, such as advice on alternative foods to maintain a healthy and varied diet, may increase the likelihood of adherence and a positive prognosis.

Some people do not report symptomatic improvement after starting treatment, and some will still have persisting symptoms after 6 to 12 months. Follow‑up care for people diagnosed with coeliac disease varies widely in the UK and therefore the needs of people whose symptoms do not improve may not be addressed.

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

  • diagnosis of coeliac disease

  • growth in children and young people

  • health-related quality of life

  • incidence of osteoporosis

  • incidence of intestinal lymphoma

  • incidence of vitamin D deficiency

  • incidence of iron deficiency.

How this quality standard supports delivery of outcome frameworks

NICE quality standards are a concise set of prioritised statements designed to drive measurable improvements in the 3 dimensions of quality – patient safety, patient experience and clinical effectiveness – for 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 2016–17

Domain

Overarching indicators and improvement areas

1 Preventing people from dying prematurely

Overarching indicators

1a Potential Years of Life Lost (PYLL) from causes considered amenable to healthcare

i Adults

Improvement areas

Reducing premature mortality from the major causes of death

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

4 Ensuring that people have a positive experience of care

Overarching indicators

4a Patient experience of primary care

i GP services

4d Patient experience characterised as poor or worse

i Primary care

Improvement areas

Improving people's experience of outpatient care

4.1 Patient experience of outpatient services

Improving people's experience of integrated care

4.9 People's experience of integrated care**

Alignment with Adult Social Care Outcomes Framework and/or Public Health Outcomes Framework

* Indicator is shared

** Indicator is complementary

Indicators in italics in development

Table 2 Public health outcomes framework for England 2016–19

Domain

Objectives and indicators

1 Improving the wider determinants of health

Objective

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

Indicators

1.03 Pupil absence

1.09 Sickness absence rate

2 Health improvement

Objective

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

Indicators

2.11 Diet

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, whilst reducing the gap between communities

Indicators

4.3 Mortality rate from causes considered preventable**

4.5 Under 75 mortality rate from cancer*

4.13 Health-related quality of life for older people

4.14 Hip fractures in people aged 65 and over

Alignment with Adult Social Care Outcomes Framework and/or NHS Outcomes Framework

* Indicator is shared

** Indicator is complementary

Safety and people's experience of care

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 coeliac 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. They specify 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. They also cover the provision of information to people using services. Quality statements on these aspects of patient experience are not usually included in topic-specific quality standards. However, recommendations in the development sources for quality standards that affect people's experience of using services and are specific to the topic are considered during quality statement development.

Coordinated services

The quality standard for coeliac disease specifies that services should be commissioned from and coordinated across all relevant agencies encompassing the whole coeliac disease care pathway. A person-centred, integrated approach to providing services is fundamental to delivering high-quality care to people with coeliac 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 coeliac disease service are listed in related 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 coeliac 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 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 coeliac disease. If appropriate, healthcare professionals should ensure that family members and carers are involved in the decision-making process about investigations, treatment and care.