P106 The current provision of venesection treatment for haemochromatosis patients in the United Kingdom

<h3>Introduction</h3> Haemochromatosis is the most common inherited metabolic disorder in the United Kingdom (UK) with up to 400,000 residents homozygous for the pC282Y genetic variant. Venesection remains the primary treatment option and has been proven to reduce the risk of severe liver disease and death. Despite the high prevalence of haemochromatosis and the apparent simplicity of treatment, there is significant variation in patient care in the UK. A recent publication from Europe has highlighted the issue of patients at low risk of harm (non-pC282Y homozygous) continuing to be treated without evidence of benefit. Case definition and treatment monitoring are crucial to ensure effectiveness of treatment and prevent complications. As a prelude to studies examining the benefit and effectiveness of venesection in haemochromatosis we conducted a national survey of current venesection practice. <h3>Methods</h3> A survey questionnaire was designed by key members of the BSG/BASL haemochromatosis Special Interest Group. This was disseminated to all NHS Trusts/Health Boards in the UK via the existing network of NCEPOD (National Confidential Enquiry into Patient Outcomes and Death). The survey was open for a period of 4 weeks between May and June 2024 with a reminder sent 2 weeks before closing. All responses were collated using SurveyMonkey and analysed using Microsoft Excel. <h3>Results</h3> Responses were received from 59/142 (41.5%) acute NHS Trusts/Health Boards currently providing venesection in 63 organisations/hospitals. Respondents currently provide care for over 16,000 patients. Venesection is predominantly provided in day-case units. There is a lack of consistency in how venesection treatment is recorded and coded (27 as day-case attendance, 5 as outpatient follow-up, 20 as venesection treatment). 14 services keep no record of the genotype of their patients receiving venesection. Of the remainder, the cohort of patients undergoing venesection who were pC282Y homozygotes was &lt;50% in 2 organisations, 50–75% in 13 organisations and &gt;75% in 34 organisations. All respondents monitor serum ferritin with clear treatment targets but utilisation of transferrin saturation for monitoring is more variable. 65.1% (41/63) of organisations request transferrin saturation during the maintenance phase of venesection and 68.2% (28/41) of those adjust treatment frequency based on the values. <h3>Conclusion</h3> Venesection is widely available in the UK but there remain considerable variations in the HFE genotypes being treated, treatment targets and how treatment is recorded. Standardisation of care and consistency of treatment will facilitate future studies of treatment effect in this large group of patients.