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18 The use of lanreotide in the treatment of congenital hyperinsulinism
  1. Clare Gilbert,
  2. Kate Morgan,
  3. Louise Doodson,
  4. Hannah Antell
  1. Great Ormond Street Hospital for Children


Introduction The use of Lanreotide in the treatment of Congenital Hyperinsulinism (CHI) is now well-established (Shah et al, 2015). The CHI team at Great Ormond Street Hospital have a cohort of 46 patients on Lanreotide. Comments from parents such as ‘it has transformed our lives’ has reinforced the need to continue to be innovative in delivering this treatment.

The monthly injection may seem to be a straightforward procedure however, Somatuline autogel is a thick, viscous drug in a pre-filled syringe administered via a large, wide bore needle, prepared and licensed for the use in adults with neuroendocrine tumours. The preparation and administration of these injections encompasses all aspects of the paediatric nurses skills.

Objective To assess in the implementation of a package of care, delivered by the Clinical Nurse Specialists, to empower parents to administer these injections independently.

Design An established guideline is followed using pain scores and quality of life questionnaires. Training parents the skills to administer this injection at home has given them control and flexibility, ultimately improving the child and family’s quality of life.

Results To date 46 patients have been treated with Lanreotide. 14 patients did not continue, 4 patients have successfully weaned and stopped treatment, 3 patients have left the service of GOSH due to transitioning, hence 25 patients actively remain on Lanreotide. Of these 25 patients, we have trained 18 parents to administer this injection independently. A further 2 families are currently in training and the 5 remaining patients receive their Lanrreotide from community services.

Conclusion A parent survey of 20 families by the UK parents support group concluded that overall 13 out of the 20 families reported that the treatment of Lantreotide and the empowerment to administer the injection at home had improved their child and family’s quality of life.

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