Abstract

Accurate diagnosis and prognosis of disorders of consciousness is complicated by the variability amongst patients’ trajectories. However, the majority of research and scientific knowledge in this field is based on cross-sectional studies. The translational gap in applying this knowledge to inform clinical management can only be bridged by research that systematically examines follow-up. In this study, we present findings from a novel longitudinal study of the long-term recovery trajectory of 39 patients, repeatedly assessed using the Coma Recovery Scale-Revised once every 3 months for 2 years, generating 185 assessments. Despite the expected inter-patient variability, there was a statistically significant improvement in behaviour over time. Further, improvements began approximately 22 months after injury. Individual variation in the trajectory of recovery was influenced by initial diagnosis. Patients with an initial diagnosis of unresponsive wakefulness state, who progressed to the minimally conscious state, did so at a median of 485 days following onset—later than 12-month period after which current guidelines propose permanence. Although current guidelines are based on the expectation that patients with traumatic brain injury show potential for recovery over longer periods than those with non-traumatic injury, we did not observe any differences between trajectories in these two subgroups. However, age was a significant predictor, with younger patients showing more promising recovery. Also, progressive increases in arousal contributed exponentially to improvements in behavioural awareness, especially in minimally conscious patients. These findings highlight the importance of indexing arousal when measuring awareness, and the potential for interventions to regulate arousal to aid long-term behavioural recovery in disorders of consciousness.

Highlights

  • The degree of variability amongst patients with prolonged disorders of consciousness makes accurate diagnosis challenging (Royal College of Physicians, 2013)

  • Pairwise contrasts (Bonferroni corrected) indicated that whilst there was no difference among assessments 1, 2 or 3, there was a significant change in Coma Recovery ScaleRevised (CRS-R) from assessment 3 to 4 [t(132) 1⁄4 À5.16, P < 0.001, contrast estimate (CE) 1⁄4 À3.06], 5 to 6 [t(132) 1⁄4 À3.18, P 1⁄4 0.03, CE 1⁄4 À1.31], 6 to 7 [t(132) 1⁄4 À4.727, P < 0.001, CE 1⁄4 À2.48] and 7 to 8 [t(132) 1⁄4 À10.93, P < 0.001, CE 1⁄4 À4.78]

  • The longitudinal research project described here demonstrates that prolonged disorders of consciousness (pDOC) patients do show long-term behavioural improvements post-injury, extending over 2 years and beyond

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Summary

Introduction

The degree of variability amongst patients with prolonged disorders of consciousness (pDOC) makes accurate diagnosis challenging (Royal College of Physicians, 2013). Prognostication is difficult, as patients are often not followed up regularly. In large part, this is because of fragmentation of care over the patient journey: they are often transferred to specialist rehabilitation centres or to the family home following acute care, with incomplete records of their recovery history and outcomes. The degree of variability surrounding many existing prognostic indicators makes accurate prognostication challenging To this end, the pDOC practice guidelines highlight the need for more systematic longitudinal research to relate clinical presentation to outcomes (Royal College of Physicians, 2013; Giacino et al, 2018)

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