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Gastro-oesophageal reflux disease in children and young people: diagnosis and management

NICE Guideline, No. 1

This guideline is the basis of QS112.

Overview

This guideline covers diagnosing and managing gastro-oesophageal reflux disease in children and young people (under 18s). It aims to raise awareness of symptoms that need investigating and treating, and to reassure parents and carers that regurgitation is common in infants under 1 year.

Who is it for?

Introduction

Gastro-oesophageal reflux (GOR) is a normal physiological process that usually happens after eating in healthy infants, children, young people and adults. In contrast, gastro-oesophageal reflux disease (GORD) occurs when the effect of GOR leads to symptoms severe enough to merit medical treatment. GOR is more common in infants than in older children and young people, and it is noticeable by the effortless regurgitation of feeds in young babies.

In clinical practice, it is difficult to differentiate between GOR and GORD, and the terms are used interchangeably by health professionals and families alike. There is no simple, reliable and accurate diagnostic test to confirm whether the condition is GOR or GORD, and this in turn affects research and clinical decisions. Furthermore, the term GORD covers a number of specific conditions that have different effects and present in different ways. This makes it difficult to identify the person who genuinely has GORD, and to estimate the real prevalence and burden of the problem. Nevertheless, regardless of the definition used, GORD affects many children and families in the UK, who commonly seek medical advice and as a result, it constitutes a health burden for the NHS.

Generally, experts suggest that groups of children most affected by GORD are otherwise healthy infants, children with identifiable risk factors, and pubescent young people who acquire the problem in the same way as adults. The 2 other specific populations of children affected by GORD are premature infants and children with complex, severe neurodisabilities. In the latter group, the diagnosis is complicated further by a tendency to confuse vomiting with or without gut dysmotility with severe GORD. In addition, for a child with neurodisabilities, a diagnosis of GORD often fails to recognise a number of distinct problems that may coexist and combine to produce a very complicated feeding problem in an individual with already very complex health needs. For example, a child with severe cerebral palsy may be dependent on enteral tube feeding, have severe chronic vomiting, be constipated, have marked kyphoscoliosis, possess a poor swallow mechanism and be unable to safely protect their airway resulting in a risk of regular aspiration pneumonia.

This guideline focuses on signs and symptoms and interventions for GORD. Commonly observed events, such as infant regurgitation, are covered as well as much rarer but potentially more serious problems, such as apnoea. Where appropriate, clear recommendations are given as to when and how reassurance should be offered. The guideline also advises healthcare professionals about when to think about investigations, and what treatments to offer. Finally, it is emphasised that other, and on occasion more serious, conditions that need different management can be confused with some of the relatively common manifestations of GOR or GORD. These warning signs are defined under the headings of ‘red flags’ along with recommended initial actions.

Safeguarding children

For more information see the NICE guideline on child maltreatment.

Medicines

The guideline will assume that prescribers will use a medicine’s summary of product characteristics to inform decisions made with individual patients.

Key priorities for implementation

The following recommendations have been identified as priorities for implementation. The full list of recommendations is in section 1.

Give advice about gastro-oesophageal reflux (GOR) and reassure parents and carers that in well infants, effortless regurgitation of feeds: – is very common (it affects at least 40% of infants) – usually begins before the infant is 8 weeks old – may be frequent (5% of those affected have 6 or more episodes each day) – usually becomes less frequent with time (it resolves in 90% of affected infants before they are 1 year old) – does not usually need further investigation or treatment.

In infants, children and young people with vomiting or regurgitation, look out for the ‘red flags’ in table 1, which may suggest disorders other than GOR. Investigate or refer using clinical judgement.

Do not routinely investigate or treat for GOR if an infant or child without overt regurgitation presents with only 1 of the following: – unexplained feeding difficulties (for example, refusing to feed, gagging or choking) – distressed behaviour – faltering growth – chronic cough – hoarseness – a single episode of pneumonia.

Do not offer an upper gastrointestinal (GI) contrast study to diagnose or assess the severity of gastrointestinal reflux disease (GORD) in infants, children and young people.

Arrange a specialist hospital assessment for infants, children and young people for a possible upper GI endoscopy with biopsies if there is: – haematemesis (blood-stained vomit) not caused by swallowed blood (assessment to take place on the same day if clinically indicated; also see table 1) – melaena (black, foul-smelling stool; assessment to take place on the same day if clinically indicated; also see table 1) – dysphagia (assessment to take place on the same day if clinically indicated) – no improvement in regurgitation after 1 year old – persistent, faltering growth associated with overt regurgitation – unexplained distress in children and young people with communication difficulties – retrosternal, epigastric or upper abdominal pain that needs ongoing medical therapy or is refractory to medical therapy – feeding aversion and a history of regurgitation – unexplained iron-deficiency anaemia – a suspected diagnosis of Sandifer’s syndrome.

In formula-fed infants with frequent regurgitation associated with marked distress, use the following stepped-care approach: – review the feeding history, then – reduce the feed volumes only if excessive for the infant’s weight, then – offer a trial of smaller, more frequent feeds (while maintaining an appropriate total daily amount of milk) unless the feeds are already small and frequent, then – offer a trial of thickened formula (for example, containing rice starch, cornstarch, locust bean gum or carob bean gum).

In formula-fed infants, if the stepped-care approach is unsuccessful (see recommendation 1.2.3). stop the thickened formula and offer alginate therapy for a trial period of 1–2 weeks. If the alginate therapy is successful continue with it, but try stopping it at intervals to see if the infant has recovered.

Do not offer acid-suppressing drugs, such as proton pump inhibitors (PPIs) or H₂ receptor antagonists (H₂RAs), to treat overt regurgitation in infants and children occurring as an isolated symptom.

Do not offer metoclopramide, domperidone or erythromycin [1] to treat GOR or GORD unless all of the following conditions are met: – the potential benefits outweigh the risk of adverse events – other interventions have been tried – there is specialist paediatric healthcare professional agreement for its use.

Table 1

‘Red flag’ symptoms suggesting disorders other than GOR.

1. Recommendations

The following guidance is based on the best available evidence. The full guideline gives details of the methods and the evidence used to develop the guidance.

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.

Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off-label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Terms used in this guideline

Gastro-oesophageal reflux (GOR) is the passage of gastric contents into the oesophagus. It is a common physiological event that can happen at all ages from infancy to old age, and is often asymptomatic. It occurs more frequently after feeds/meals. In many infants, GOR is associated with a tendency to ‘overt regurgitation’ – the visible regurgitation of feeds.

Gastro-oesophageal reflux disease (GORD) refers to gastro-oesophageal reflux that causes symptoms (for example, discomfort or pain) severe enough to merit medical treatment, or to gastro-oesophageal reflux-associated complications (such as oesophagitis or pulmonary aspiration). In adults, the term GORD is often used more narrowly, referring specifically to reflux oesophagitis.

Marked distress There is very limited evidence, and no objective or widely accepted clinical definition, for what constitutes ‘marked distress’ in infants and children who are unable to adequately communicate (expressively) their sensory emotions. In this guideline, ‘marked distress’ refers to an outward demonstration of pain or unhappiness that is outside what is considered to be the normal range by an appropriately trained, competent healthcare professional, based on a thorough assessment. This assessment should include a careful analysis of the description offered by the parents or carers in the clinical context of the individual child.

Occult reflux refers to the movement of part or all of the stomach contents up the oesophagus, but not to the extent that it enters the mouth or is obvious to the child, parents or carers, or observing healthcare professional. There is no obvious, visible regurgitation or vomiting. It is sometimes referred to as silent reflux.

Overt regurgitation refers tothe voluntary or involuntary movement of part or all of the stomach contents up the oesophagus at least to the mouth, and often emerging from the mouth. Regurgitation is in principle clinically observable, so is an overt phenomenon, although lesser degrees of regurgitation into the mouth might be overlooked.

Specialist refers to a paediatrician with the skills, experience and competency necessary to deal with the particular clinical concern that has been identified by the referring healthcare professional. In this guideline this is most likely to be a consultant general paediatrician. Depending on the clinical circumstances, ‘specialist’ may also refer to a paediatric surgeon, paediatric gastroenterologist or a doctor with the equivalent skills and competency.

1.1. Diagnosing and investigating GORD

Be aware that in a small proportion of infants, GOR may be associated with signs of distress or may lead to certain recognised complications that need clinical management. This is known as gastro-oesophageal reflux disease (GORD).

usually becomes less frequent with time (it resolves in 90% of affected infants before they are 1 year old)

In infants, children and young people with vomiting or regurgitation, look out for the ‘red flags’ in table 1, which may suggest disorders other than GOR. Investigate or refer using clinical judgement.

Consider referring infants and children with persistent back arching or features of Sandifer’s syndrome (episodic torticollis with neck extension and rotation) for specialist assessment.

Be aware that GOR is more common in children and young people with asthma, but it has not been shown to cause or worsen it.

Be aware that some symptoms of a non-IgE-mediated cows’ milk protein allergy can be similar to the symptoms of GORD, especially in infants with atopic symptoms, signs and/or a family history. If a non-IgE-mediated cows’ milk protein allergy is suspected, see the NICE guideline on food allergy in under 19s.

GOR only rarely causes episodes of apnoea or apparent life-threatening events (ALTEs), but consider referral for specialist investigations if it is suspected as a possible factor following a general paediatric assessment.

For children and young people who are obese and have heartburn or acid regurgitation, advise them and their parents or carers (as appropriate) that losing weight may improve their symptoms (also see the NICE guideline on obesity).

Do not offer an upper gastrointestinal (GI) contrast study to diagnose or assess the severity of GORD in infants, children and young people.

Perform an urgent (same day) upper GI contrast study for infants with unexplained bile-stained vomiting. Explain to the parents and carers that this is needed to rule out serious disorders such as intestinal obstruction due to mid-gut volvulus.

Consider an upper GI contrast study for children and young people with a history of bile-stained vomiting, particularly if it is persistent or recurrent.

Offer an upper GI contrast study for children and young people with a history of GORD presenting with dysphagia.

Arrange an urgent specialist hospital assessment to take place on the same day for infants younger than 2 months with progressively worsening or forceful vomiting of feeds, to assess them for possible hypertrophic pyloric stenosis.

haematemesis (blood-stained vomit) not caused by swallowed blood (assessment to take place on the same day if clinically indicated; also see table 1)

melaena (black, foul-smelling stool; assessment to take place on the same day if clinically indicated; also see table 1)

retrosternal, epigastric or upper abdominal pain that needs ongoing medical therapy or is refractory to medical therapy