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Radboudumc research shows that minimal conscious condition is rare

For the first time, it has been mapped out how many people are admitted to a Dutch care institution in a minimally conscious state. It concerns 32 people, according to research led by Radboudumc. In other countries, there is no precise data on this. Now that the size of this group is known, the care for these patients can be further organized.  

Every year, about 130,000 Dutch people suffer some form of acquired brain injury. The cause can be trauma such as a fall or accident, but also a brain hemorrhage or long-term oxygen deficiency. Sometimes people with severe brain injury develop a long-term disorder of consciousness (LBS). This situation arises after coma when patients open their eyes and breathe on their own, but their consciousness does not return within four weeks of the injury.

It was unknown how many patients were admitted to Dutch healthcare institutions with a specific form of LBS: the minimally conscious condition. In this situation, consciousness is severely reduced, but people do show one or more signs of consciousness. For example, they can carry out a simple task, follow an object with their eyes or show emotions.

Researcher and geriatric specialist Berno Overbeek approached all Dutch hospitals, nursing homes and various rehabilitation centers to ask whether they treated one or more patients with LBS. If so, after permission from the legal representative, the level of consciousness was determined with the Coma Recovery Scale-Revised, the most commonly used scale in these patients worldwide. 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 were on average 45 years old, two-thirds were male and more than half (53%) stayed in an institution where specialized, intensive neurorehabilitation was offered. In two-thirds (65%) of the patients, the brain injury was caused by trauma, for example an accident or a fall. The remaining patients had a non-traumatic brain injury, such as a lack of oxygen in the brain after resuscitation, or a major brain hemorrhage.

This is the first study worldwide into the number of people in a minimally conscious state in an entire country. Researchers Jan Lavrijsen and Willemijn van Erp have previously conducted similar research. They looked at another form of a long-term disorder of consciousness, namely the unresponsive waking syndrome (NWS; formerly called vegetative state). In this form of LBS, no signs of consciousness are seen; Patients show at most a few reflexes. Geriatric specialist and PhD candidate Berno Overbeek: 'The group of patients in NWS is also small, especially compared to other countries. With this new study, we confirm the picture that the condition of a long-term disorder of consciousness is rare in the Netherlands.'

A nacoma  
This research was made possible because the Expertise Network for Serious Acquired Brain Injury after coma (EENnacoma) has existed since 2016. They have more information about coma and different levels of consciousness, such as Unresponsive Wake Syndrome and Minimal Conscious State. In the EENnacoma network, which falls under the Department of Primary Care, institutions that offer specialized treatment and care to people with severe ABI and a research group are connected. In recent years, with the support of the Brain Foundation, among others, work has been done on the realization of appropriate treatment in a closed treatment chain and research for people with LBS from the comatose phase in the hospital. The group of patients with LBS is one of the so-called Low Volume High Complex (LVHC) target groups. On the initiative of the Ministry of Health, Welfare and Sport, knowledge and expertise centres are developing specialist care.

In May 2023, the network for people with LBS, with a knowledge center at Radboudumc and various nursing homes as centers of expertise, received a positive expert opinion from the Committee on Long-Term Care Expertise Centers, established by the Ministry of Health, Welfare and Sport. In this way, the ministry also makes it possible to fund specialized care and knowledge infrastructure.

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.  

Interview in the Volkskrant
Read Ellen Visser's interview with Berno Overbeek here .