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Developing clinical guidelines with scant evidence approaches taken and lessons learnt
  1. Claire Friedemann Smith1,
  2. Rosa Nieto-Hernandez1,
  3. Asmaa Abdelhamid2
  1. 1 Department of Research and Policy, Royal College of Paediatrics and Child Health, London, UK
  2. 2 Norwich Medical School, University of East Anglia, Norwich, UK
  1. Correspondence to Dr Claire Friedemann Smith, Department of Research and Policy, Royal College or Paediatrics and Child Health, London, WC1X 8SH, UK; cfriedemann86{at}

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It is estimated that 400 children suffer from an arterial ischaemic stroke (AIS) or haemorrhagic stroke (HS) in the UK each year with up to 40% dying from it, and approximately 60% of those surviving the initial attack going on to have recurrent strokes.1 Although in recent years the recognition of stroke as a disease that affects children has increased, many still experience delays in diagnosis or misdiagnosis.2 3 The view that stroke is an illness of the middle-to-late adult years may have also hindered research into stroke in childhood. The need for a clinical guideline was clear; it would provide a practical guide that should aid clinical decision-making and improve patient care,4 but when there are gaps in the literature, creating guidelines presents a challenge.

Methods of guideline development

A guideline development group (GDG) was established that consisted of clinical experts from specialties relevant to the topic of the guideline, parent representatives whose children had suffered a stroke and systematic reviewers from the Royal College of Paediatrics and Child Health, following accepted practice.5 The scope of the guideline was drafted, and after stakeholder consultation, specific clinical questions were formed.

Systematic review

Clinical questions were grouped into subtopics and review protocols were written. Searches were carried out in five databases, MEDLINE, Embase, PsycInfo, Cochrane Library and CINAHL, between 1995 and 2016, these were screened and data extracted from relevant studies. Our expectation was that the literature on rehabilitation following stroke in childhood would not be sufficient to answer all of our clinical questions and so our inclusion and exclusion criteria allowed for the inclusion of studies carried out in children with similar deficits, for example, as a result of acquired brain injury. Despite this, we still found that 36% of all our clinical questions had two or fewer studies on which to base recommendations.

The …

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