Financial burden to patients and informal carers of myelodysplastic syndromes in England: a modelled analysis stratified by transfusion dependence

Background Myelodysplastic syndromes (MDS) can impose indirect and out-of-pocket costs on patients and informal carers despite NHS treatment being free at the point of care. No MDS-specific estimate of this burden has been identified for England. Methods A prevalence-based, bottom-up cost-of-illness model was developed for England in 2024 GBP. Costs were stratified by transfusion dependence and included gross out-of-pocket travel and parking costs, informal caregiver time valued at the National Living Wage, and an illustrative patient productivity scenario. Parameters were taken from NICE documents, published MDS literature, ONS earnings data, HMRC mileage rates and NHS parking guidance. Results The prevalent MDS population in England was estimated at 9,000 patients, including 3,150 transfusion-dependent (TD) and 5,850 transfusion-independent (TI) patients. Gross annual direct costs were £469 per TD patient and £170 per TI patient, giving a population total of £2.5 million. Informal caregiver time was the main cost component, at £12,625 per TD patient and £3,032 per TI patient, or £57.5 million nationally. Direct and carer costs totalled £60.0 million per year. An illustrative productivity scenario added £6.7 million, raising the total to £66.7 million. Combined direct and carer costs were 4.1 times higher for TD than TI patients. Conclusions MDS-related financial burden in England is driven mainly by informal carer time and is concentrated among TD patients. These findings support prospective measurement of financial toxicity and caregiver burden in MDS studies, and highlight the patient-side economic value of achieving transfusion independence.