OBJECTIVES: UM is an ultra-rare disease, with an inherently variable treatment pathway. Despite radical ocular intervention(s), ~50% of patients experience metastatic recurrence. With limited therapeutic options available, 1-year survival for mUM is 10-15%. Consequently, there is sparse data on the disease burden of mUM to NHSE. This study assessed a cohort of mUM patients within HES to evaluate their patterns of care and medical resource use.

METHODS: A cohort of UM (ICD-10 codes C693 or C694) patients that developed a subsequent cancer code (indicating metastasis), were identified within HES (observational period: Apr2012-Jun2016, follow-up until Jan2017). Clinical diagnoses, medical procedures and tariff costs for all NHSE inpatient, day-case and A&E admissions were analysed. To specifically assess mUM resource utilisation, admissions prior to metastasis were omitted. This analysis excluded costs not captured within HES (e.g. High Cost Drugs, Specialised Services, non-hospital palliative care).

RESULTS: In our cohort (n=450), 80% of inpatient admissions for primary UM occurred at the three specialist supra-regional ocular oncological centres (London, Liverpool and Sheffield). “Ophthalmology” was the most frequent (77%) speciality treating patients; and 63% of patients were treated ≥40 km from home. For metastatic patients, 31% of inpatient admissions were at the three supra-regional centres, the rest at local or regional hospitals. “Medical oncology” was the most frequent (40%) treatment speciality. 28% of patients were treated ≥40 km from home; and chemo-/immunotherapy was the most frequent medical procedure delivered (112 patients, 25%). Over the observed period, the cost to NHSE for mUM inpatient admissions was £2.5 million (mean: £6,084 per patient; range: £224-58,854). The cohort attended 3,618 outpatient appointments and had 669 A&E visits.

CONCLUSIONS: mUM was identified in >80% of our UM cohort whilst under surveillance at specialist centres. Large variations in mUM medical resource utilisation were observed, reflecting the heterogeneity in: disease progression, local-regional care pathways and treatment effectiveness.