Research on patients who have impaired consciousness, especially those who acquired severe brain injury or who have suffered from prolonged disorders of consciousness, has exploded in the last decade, not least within the Human Brain Project. With two international guidelines (one from Europe and one from the United States) available to facilitate care for these patients, a recent survey of 216 professionals from 40 countries finds there is still no consistency of care procedures for patients with prolonged disorders of consciousness across countries and clinical settings.
To make these guidelines more effective, Michele Farisco, researcher at Uppsala University’s Centre for Research Ethics & Bioethics, coordinated an online survey together with the Special Interest Group on Disorders of Consciousness of the International Brain Injury Association. The goal was to explore health professional clinical practices related to the management of patients with prolonged Disorders of Consciousness, and compare said practices with selected recommendations from both guidelines.
They found that while some recommendations are being followed, others are not. This means there is no consistency in diagnostic, prognostic, and therapeutic procedures for these patients. According to the authors of the Journal of Neurology publication, some of the recommendations may need to be refined to enhance their usefulness to practitioners in the clinics.
“This is already a challenging patient population, but any guideline also has to work in the intended context. What we have found through our survey, is the need to consider also the complicating factors of the organisations caring for these patients. For example, whether the patient is cared for at a research hospital or not, what expertise is available, and what resources there are. Both human and financial,” says Michele Farisco.
Michele Farisco and his co-authors stress the importance of focusing on key aspects of care, like assessing residual consciousness, addressing pain, and dealing with the challenges introduced by the COVID-19 pandemic on family involvement. Their findings serve as a crucial step towards improving the quality of care for this vulnerable patient population, ensuring a more consistent and effective approach to their treatment across borders and healthcare settings.
Farisco, M., Formisano, R., Gosseries, O. et al. International survey on the implementation of the European and American guidelines on disorders of consciousness. J Neurol (2023). https://doi.org/10.1007/s00415-023-11956-z