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Long-term follow-up of survivors of childhood cancer (SIGN Clinical Guideline 132)
  1. Hoong-Wei Gan1,2,
  2. Helen A Spoudeas2,3
  1. 1Developmental Endocrinology Research Group, UCL Institute of Child Health, London, UK
  2. 2The London Centre for Paediatric Endocrinology & Diabetes, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK
  3. 3The London Centre for Paediatric Endocrinology & Diabetes, University College London Hospitals NHS Foundation Trust, London, UK
  1. Correspondence to Dr Hoong-Wei Gan, Developmental Endocrinology Research Group, Clinical & Molecular Genetics Unit, UCL Institute of Child Health, 30 Guilford Street, London WC1N 1EH, UK; hoong.gan.11{at}

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Five-year childhood cancer survival rates have increased to 80–90% for some tumours due to intensified treatments and better supportive care imposed on an incidence stable over four decades.1 ,2 Between 2005 and 2012, the number of UK survivors has risen from 26 000 to 33 000, or from 1:1000 to 1:715 UK adults.3 ,4 However, 40% experience chronic severe or life-threatening consequences (‘late effects’) of their tumour and/or its treatment.5 The recent National Cancer Survivorship Initiative (NCSI) has highlighted the unmet need in service provision for adult childhood cancer survivors, with a proposed survivorship framework and stratified care pathways modelled on >20 years’ prior experience.6 ,7

In March 2013, the Scottish Intercollegiate Guidelines Network (SIGN) published updated guidance on long-term follow-up of childhood cancer survivors to aid the ‘identification, assessment and management of late effects’ aimed at primary, secondary and tertiary healthcare practitioners.8 The Guideline Development Group (GDG) included representatives from paediatric haematology, oncology, endocrinology, reproductive medicine, cardiology, general paediatrics and general practice, as well as a survivor.

Previous and other associated guidelines

The previous SIGN 76 guideline was published in 2004. This revision updates information on fertility preservation, cardiac late effects and patient information provision, and provides new sections on subsequent primary cancers (SPCs), bone health and metabolic syndrome. The UK Children's Cancer Study Group's (UK CCSG) best practice statement9 is a potentially valuable companion guideline for tertiary care practitioners requiring details of therapeutic regimens and their toxicity profiles to individualise care for those most affected.

Key issues

  • Section 11: long-term follow-up provides a useful summary of the recommendations. It recognises the multisystemic and evolving nature of late effects over decades of survival, concluding a need for lifelong multidisciplinary follow-up (table 1). The authors suggest a three-tiered follow-up stratified by disease-related and/or treatment-related morbidity risk (table 2) and list the …

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