Prolonged disorders of consciousness: identification using the UK FIM + FAM and cohort analysis of outcomes from a UK national clinical database

Abstract

Purpose 1: To determine whether Total UK FIM + FAM scores can identify patients in VS/MCS. 2: Using the identified cut-off points, to examine outcomes from specialist rehabilitation. Methods Part 1: Retrospective analysis of a consecutive clinical cohort (n = 388) presenting to a single specialist PDOC evaluation programme 2007–2021. FIM + FAM scores were analysed by PDOC diagnosis to define cut-off points for vegetative (VS) and minimally conscious states (MCS). Part 2: Multicentre cohort analysis of prospectively-collected clinical outcomes data from the UK Rehabilitation Outcomes Collaborative database of adults in PDOC registered 2011–2020 (n = 2384 in 68 centres). Results Cut-off points of ≤31 and 32–35 in FIM + FAM total scores respectively identified patients in VS/MCS-Minus and MCS-Plus. Approximately 365 PDOC patients are admitted to specialist rehabilitation units in England each year. By discharge, 43% have emerged into consciousness and demonstrate a wide range of disability. A few reached full independence, but the majority remained severely dependent. Nevertheless, those who emerged generated mean net life-time savings of over £436,000 (£400 million for this cohort). Conclusion In absence of a dedicated PDOC registry, FIM + FAM scores can identify patients in VS/MCS at population level. Identifying those who emerge and providing timely rehabilitation generates cost-savings well-exceeding the cost of the evaluation/rehabilitation programme. Implications for rehabilitation The UK National Health Service currently collects no systematic data to identify patients in PDOC, so we have no accurate information on how many patients there are, where they are managed or what their outcomes are. In the absence of more direct data, total FIM + FAM scores of < =31 and 32–35 respectively can be used to identify patients in vegetative and minimally conscious states. Of the 365 or so patients admitted to specialist rehabilitation units per year, 43% emerge into consciousness leaving about 150 patients per year in PDOC states that are likely to be permanent. Identifying those who emerge and providing timely rehabilitation generates cost-savings that pay for the entire PDOC evaluation/rehabilitation programme many times over.