{
  "abstract": "Background Transient Hyperinsulinism often resolves within the first year of life, but many affected infants require temporary treatment with diazoxide, a medication associated with side effects including pulmonary hypertension, fluid retention, and hypertrichosis. Historically, discontinuation of diazoxide required hospital admission for glucose monitoring and fasting tolerance testing, typically scheduled between 6–12 months of age. During the COVID-19 pandemic, restrictions delayed inpatient admissions, extending unnecessary exposure to diazoxide therapy.Objective Develop a CNS-led pathway to enable parents/carers to safely stop diazoxide at home under structured guidance and support from the CHI specialist nursing team.Method To develop a guideline and eligibility criteria for pathway. The pathway needs to include clear education for parents/carers, regularly telephone check-ins, and ongoing home blood glucose monitoring. Once off diazoxide, infants to be admitted for an overnight fasting tolerance test, rather than the previous 48-hour inpatient stay with a 24-hour glucose profile. Patient-reported outcome measure to obtain feedback from families to evaluate family experience with the pathway.Results Implementation of the pathway led to a significant reduction in time on diazoxide therapy by 59 days. Hospital admission duration reduced by 29 hours, reducing burden on families, improving inpatient efficiency and reducing cost of treatment by £1988 per patient. A patient survey involving 30 families found that all participants (100%) recalled discussions about the treatment pathway and felt reassured by the staff’s support in discontinuing diazoxide at home. Additionally, 96.7% reported feeling confident in managing the cessation of diazoxide independentlyConclusion This CNS-led pathway enabled earlier discontinuation of diazoxide, reducing exposure to side effects and improving quality of life for infants and families. It also led to cost savings through reduced bed days and medication use. Positive parental feedback supports continued use of the pathway.",
  "authors": [
    {
      "affiliations": [
        "Great Ormond Street Hospital for Children NHS Foundation Trust, UK"
      ],
      "name": "Kate Morgan"
    },
    {
      "affiliations": [
        "Great Ormond Street Hospital for Children NHS Foundation Trust, UK"
      ],
      "name": "Clare Gilbert"
    },
    {
      "affiliations": [
        "Great Ormond Street Hospital for Children NHS Foundation Trust, UK"
      ],
      "name": "Niamh Harman"
    },
    {
      "affiliations": [
        "Great Ormond Street Hospital for Children NHS Foundation Trust, UK"
      ],
      "name": "Sophie Alexander"
    },
    {
      "affiliations": [
        "Great Ormond Street Hospital for Children NHS Foundation Trust, UK"
      ],
      "name": "Antonia Dastamani"
    }
  ],
  "title": "50 Development and implementation of a CNS-led pathway to discontinue diazoxide at home in infants with transient Hyperinsulinism",
  "uid": "f8225e28-0578-56fc-92c6-fda0a0769747"
}