Recommendations for research

The Guideline Development Group (GDG) has made the following recommendations for research, based on its review of evidence, to improve NICE guidance and patient care in the future. The GDG's full set of recommendations for research are detailed in the full guideline.

1 Polyethylene glycol 3350 + electrolytes in children under 1

What is the effectiveness of polyethylene glycol 3350 + electrolytes in treating idiopathic constipation in children younger than 1 year old, and what is the optimum dosage?

Why this is important

There is some evidence that treatment of constipation is less effective if faecal impaction is not dealt with first. Disimpaction with oral macrogols is recommended for children and their use avoids the need for rectal treatments.

Rectal treatments are used more commonly in hospital than at home. Although relatively few infants are admitted to hospital, there would be savings if initially all children were disimpacted at home.

Polyethylene glycol 3350 + electrolytes, an oral macrogol, is licensed for disimpaction in children older than 5 years. Increasing experience has shown that it is effective in infants younger than 1 year old, but evidence is limited to small case series. If dosage guidelines and evidence on macrogol use in infants were obtained and published, more healthcare professionals might be encouraged to try macrogols in this age group. It would also allow the guideline to be applicable across the whole paediatric age group.

2 Age-specific information

Is age-specific information more effective than non-age-specific information in increasing children's knowledge and understanding of constipation and its treatment, and what information should be given?

Why this is important

When treating idiopathic constipation it is helpful if children and young people understand how the bowel works, what can go wrong and what they can do about it. Younger children (pre toilet training) need to allow stools to come out. Older children and young people have a more active role and need to develop a habit of taking all prescribed medication, sitting on the toilet each day and pushing stools out. Volition from the child or young person is vital to establish and sustain a regular toilet habit. Intended learning outcomes are similar for all age groups.

Theory-based research has led to the development of some materials such as 'Sneaky-poo' that are not appropriate for young children. To help clinicians and parents motivate children and young people to fully participate in managing their constipation it is important to discover how best to communicate information to them, what materials are most effective and, specifically, what works at different ages.

3 Specialist services

Do specialist nurse-led children's continence services or traditional secondary care services provide the most effective treatment for children with idiopathic constipation (with or without faecal incontinence) that does not respond fully to primary treatment regimens? This should consider clinical and cost effectiveness, and both short-term (16 weeks) and long-term (12 months) resolution.

Why this is important

By the time children reach tertiary care they have often suffered years of constipation with or without faecal incontinence and have intractable constipation.

Findings from one trial have suggested that children referred to a tertiary gastroenterology service and diagnosed as having idiopathic constipation are managed as effectively by nurse-led follow-up as by a consultant paediatric gastroenterology service. Parent satisfaction was improved by the nurse-led service. However, the nurse-led service may require increased resources because many more contacts are made. Several services with a similar model of care have been established but cost effectiveness has not been formally assessed.

For coherent services to develop across the UK, the cost effectiveness of specialist nurse-led services provided as first referral point if primary treatment regimens have not worked needs to be examined.

4 Colonic washouts

What is the effectiveness of different volumes and types of solutions used for colonic washouts in children who have undergone an antegrade colonic enema (ACE) procedure for intractable chronic idiopathic constipation?

Why this is important

The ACE procedure has a role in the management of people with treatment-resistant symptoms. Close follow-up is integral to the effectiveness of this technique to allow safe and effective administration of washout solutions.

The choice of washout solutions and frequency of administration differs between centres. Outcomes may be improved by evaluating how experienced centres choose washout solutions and by comparing techniques.

Centres offering the ACE procedure as treatment for children with chronic idiopathic constipation should be surveyed for their choice of washout solution. To determine the perceived strengths and weaknesses of each solution, the survey should cover enema, choice of washout fluid, volumes and frequency of administration.

5 Models of service

What is the impact of specific models of service on both clinical and social outcomes to deliver timely diagnosis and treatment interventions in children with chronic idiopathic constipation and their families?

Why this is important

There has been no research to explore the social impact on children with constipation and their families, and many of the clinical studies have been of mediocre quality. A comprehensive study is needed that investigates the effectiveness of specific models of care, and that takes into consideration both the clinical and social impact of this complex condition.