Research at Radboud University Medical Center shows that minimally conscious states are rare
For the first time, it has been mapped how many people are admitted to a Dutch healthcare institution in a minimally conscious state. This concerns 32 people, according to research led by Radboud university medical center. There is no accurate data on this in other countries. Now that it is clear how many people are involved, care for these patients can be further organized. This research was made possible by the Eennacoma Expertise Network and the Brain Foundation.
Every year, approximately 130,000 Dutch people suffer some form of non-congenital brain injury. The cause can be a trauma such as a fall or accident, but also a cerebral hemorrhage or prolonged oxygen deficiency. Sometimes people with serious brain damage develop a long-term disorder of consciousness (LBS). This situation occurs after coma when patients open their eyes and breathe independently, but their consciousness does not return within four weeks after the injury.
Minimally conscious state
It was unknown how many patients were admitted to Dutch healthcare institutions with a specific form of LBS: the minimally conscious state. In this situation, consciousness is severely reduced, but people do show one or more signs of consciousness. For example, they can perform a simple command, follow an object with their eyes or show emotions.
Researcher and geriatric medicine specialist Berno Overbeek approached all Dutch hospitals, nursing homes and various rehabilitation centers with the question whether they treated one or more patients with LBS. If so, after consent, the level of consciousness was determined. The researchers collected medical characteristics via questionnaires completed by the treating physician. This showed that 32 people in the Netherlands were admitted in a minimally conscious state.
These 32 patients had an average age of 45 years, two-thirds were male and more than half (53%) stayed in an institution that offered specialized, intensive neurorehabilitation. In two-thirds (65%) of the patients, the brain injury was caused by trauma, for example an accident or a fall. The other patients suffered from a non-traumatic brain injury, such as a lack of oxygen in the brain after resuscitation, or a major cerebral hemorrhage.
Confirmation that it rarely occurs
This is the first worldwide study into the number of people in a minimally conscious state in an entire country. Researchers Jan Lavrijsen and Willemijn van Erp previously conducted similar research. They looked at another form of a long-term disorder of consciousness, namely the unresponsive waking syndrome (NWS; previously called vegetative state). In this form of LBS, no signs of consciousness are seen; patients show at most a few reflexes.
Geriatric medicine specialist and PhD candidate Berno Overbeek: ‘The group of patients in NWS is also small. With this new research we confirm the impression that the condition of a long-term consciousness disorder is rare in the Netherlands.’
Ennacoma
This research was possible because since 2016 the Expertise Network for Serious Non-Congenital Brain Injury after coma (Ennacoma) consists. In the Eennacoma network, institutions that provide specialized treatment and care to people with severe NAH and a research group are connected.
In recent years, with the support of the Brain Foundation, among others, work has been done to realize appropriate treatment and research for people with LBS from the comatose phase in the hospital. At the initiative of the Ministry of Health, Welfare and Sport, knowledge and expertise centers are developing specialist care.
About this publication
This article was published in Neurology: Prevalence of the minimally conscious state among institutionalized patients in the Netherlands: a nationwide study – Berno Overbeek, Willemijn van Erp, Henk Eilander, Raymond Koopmans, Jan Lavrijsen. Neurology devoted an editorial to this publication. The research was made possible by the Brain Foundation.
Appropriate care for people with LBS
This description of appropriate care for people with long-term consciousness disorders (LBS) is a start towards a standard of care. The care needs and decision-making processes at LBS are very complex. We choose the term ‘appropriate care’ because…
2023-10-27 10:25:44
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