Overview of 2018 surveillance methods

NICE's surveillance team checked whether recommendations in bedwetting in under 19s (NICE guideline CG111) remain up to date.

The surveillance process consisted of:

  • Initial feedback from topic experts via a questionnaire.

  • Literature searches to identify relevant evidence.

  • Assessing the new evidence against current recommendations and deciding whether or not to update sections of the guideline, or the whole guideline.

  • Considering comments received during consultation and making any necessary changes to the decision.

For further details about the process and the possible update decisions that are available, see ensuring that published guidelines are current and accurate in developing NICE guidelines: the manual.

Evidence considered in surveillance

Search and selection strategy

We searched for new evidence related to the whole guideline.

We found 43 studies in a search for randomised controlled trials, systematic reviews and non-randomised studies published between 26 August 2014 and 27 July 2018.

We also included:

  • 6 relevant studies from a total of 16 identified by topic experts, 5 of which were also identified through our search

  • 17 studies identified by search in previous surveillance in 2012 and 2014.

From all sources, we considered 61 studies to be relevant to the guideline.

See appendix A: summary of evidence from surveillance for details of all evidence considered, and references.

Ongoing research

We checked for relevant ongoing research; of the ongoing studies identified, 5 studies were assessed as having the potential to change recommendations; therefore we plan to regularly check whether these studies have published results, and evaluate the impact of the results on current recommendations as quickly as possible. These studies are:

Intelligence gathered during surveillance

Views of topic experts

We sent questionnaires to 9 topic experts and received 5 responses. The topic experts either:

  • participated in the guideline committee who developed the guideline

  • were recruited to the NICE Centre for Guidelines Expert Advisers Panel to represent their specialty.

The main areas that they highlighted for update included:

  • Lack of clarity within the guideline on the age that a child can be expected to receive desmopressin treatment for nocturnal enuresis as the guideline does not currently define an age limit lower than 5.

  • The recommendation on enuresis alarms in the management of bedwetting has appeared to cause some confusion as it has been interpreted that all children with bedwetting should be offered alarm treatment before medication.

  • Lack of UK service provision for children with bedwetting following the move of school nursing to Public Health.

Other sources of information

We considered all other correspondence received since the guideline was published. As part of this surveillance review we actively engaged with the Cochrane Incontinence Group. The group helped to identify relevant systematic reviews and randomised controlled trials that potentially impacted on our review proposal.

The Cochrane Incontinence Group highlighted that the Standardisation Committee of the International Children's Continence Society (ICCS) has now updated their Standardisation of Terminology documents and recommend that all studies on nocturnal enuresis should conform to standardised terminology. The main impact for this guideline on children and young people with bedwetting is distinguishing those who wet only at night and those with other underlying bladder problems and daytime symptoms which may not respond to treatment. Before 2010, many papers did not distinguish between these 2 groups. NICE has checked the guideline recommendations which were based on both evidence and committee discussion and are confident that the guideline does reflect different management for these 2 groups where appropriate. This has been taken into account in the surveillance reviews of the guideline. NICE's surveillance team will ensure that terminology is also noted for future reviews of the guideline.

Views of stakeholders

Stakeholders are consulted on all surveillance decisions except if the whole guideline will be updated and replaced. Because this surveillance decision was to not update the guideline, we consulted on the decision.

Overall, 7 stakeholders commented (including representation from professional bodies, universities and NHS trusts). Three stakeholders provided comments on the surveillance review proposal and the remaining 4 stakeholders stated that they had no substantive comments to make.

Four of the 7 stakeholders disagreed with the decision to not update the guideline, however 2 of these gave no reasons for disagreeing. We considered the suggestions for why the guideline is out of date but decided it did not need updating for the following reasons.

One stakeholder stated that further clarity was needed around the recommendations on desmopressin treatment and the age of child, referring to recommendation 1.10.1 (Offer desmopressin to children and young people over 7 years, if rapid onset and/or short-term improvement in bedwetting is the priority of treatment or an alarm is inappropriate or undesirable). The stakeholder stated that 5–7 years age grouping may discourage clinicians from starting treatment before a child is 7 years old.

However, recommendation 1.10.2 clearly states: 'Consider desmopressin for children aged 5–7 years if treatment is required and rapid onset and/or short-term improvement in bedwetting is the priority of treatment or an alarm is inappropriate or undesirable'. Furthermore the guideline states 'Do not exclude younger children (for example, those under 7 years) from the management of bedwetting on the basis of age alone' (recommendation 1.1.3). At present, we do not believe that the wording of these recommendations needs clarification. However, for interpretation of the guideline, users of NICE guidance should refer to the NICE Pathway on bedwetting in children and young people which brings together all of the nocturnal enuresis recommendations in an easy to follow format.

One stakeholder stated that adequate evidence was now available to include electrical nerve stimulation in the guideline. However, relevant studies identified in this surveillance review were small and the targeted populations were wider than the population for this guideline. Therefore, the evidence in these studies was deemed insufficient to inform new recommendations in this area.

One stakeholder suggested considering the body shape distortion in the recommendation about assessing a child or young person for any comorbidities (recommendation 1.3.9). The stakeholder stated that constipation can be a consequence of body shape distortion and this is avoidable with the right postural care. Postural care is outside the scope of this guideline but the guideline recommends that assessment, investigation and/or referral should be considered when bedwetting is associated with comorbidities and other risk factors such as constipation and/or soiling. Furthermore, it states that children or young people with soiling or constipation should be investigated and treated in line with the NICE guideline on constipation in children and young people. Managing problems with movement and posture in children and young people with cerebral palsy, was addressed in the NICE guideline on spasticity in under 19s.

One stakeholder expressed concern about the lack of service provision for children with bedwetting following the move of school nursing to Public Health. A commissioning guide prepared by the Paediatric Continence Forum and accredited by NICE addresses local service provision for children and young people with continence difficulties across England. This guide provides support for the local implementation of NICE guidance through commissioning and should be read together with the NICE guideline on bedwetting in under 19s.

See appendix B for full details of stakeholders' comments and our responses.

See ensuring that published guidelines are current and accurate in developing NICE guidelines: the manual for more details on our consultation processes.

Equalities

One expert noted that children with physical and learning difficulties are sometimes excluded from services and the NICE guideline should emphasise that it relates to all children, including children with disabilities. This issue is covered in the guideline (see patient-centred care), which states 'Good communication between healthcare professionals and patients is essential. It should be supported by evidence-based written information tailored to the patient's needs. Treatment and care, and the information patients are given about it, should be culturally appropriate. It should also be accessible to people with additional needs such as physical, sensory or learning disabilities, and to people who do not speak or read English'. In addition, inequalities in access to paediatric continence services are addressed in the NICE-accredited commissioning guide prepared by the Paediatric Continence Forum which should be read together with the NICE guideline on bedwetting in under 19s.

Editorial amendments

During surveillance of the guideline we identified the following points in the guideline that should be amended.

Recommendation 1.8.1: there are concerns that the current wording might be misinterpreted and that first-line treatment is always alarms. Therefore the text 'as the first-line treatment' will be deleted and the revised recommendation will read as follows:

1.8.1 Offer an alarm to children and young people whose bedwetting has not responded to advice on fluids, toileting or an appropriate reward system, unless:

  • an alarm is considered undesirable to the child or young person or their parents or carers or

  • an alarm is considered inappropriate, particularly if:

    • bedwetting is very infrequent (that is, less than 1–2 wet beds per week)

    • the parents or carers are having emotional difficulty coping with the burden of bedwetting

    • the parents or carers are expressing anger, negativity or blame towards the child or young person.

Recommendation 1.10.4: when checking the recommendations for treatment to confirm that they are up to date, it was noted that addition of dosage frequency of desmopressin will be helpful for users of the guideline. Therefore, the recommendation will be edited to provide full dosage information as follows:

  • In children and young people who are not completely dry after 1 to 2 weeks of the initial dose of desmopressin (200 micrograms daily [at bedtime] for Desmotabs or 120 micrograms daily for sublingual DesmoMelt), consider increasing the dose (to 400 micrograms daily for Desmotabs or 240 micrograms daily for DesmoMelt).

Overall decision

After considering all evidence and other intelligence and the impact on current recommendations, we decided that no update is necessary.

ISBN: 978-1-4731-3158-3


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