A new guideline for managing vegetative and minimally conscious states was recently published in the journals Neurology (PDF) and Archives of Physical Medicine and Rehabilitation (PDF). The development of this new guideline was partially funded by NIDILRR, continuing a history of NIDILRR-funded research in this area.
The guideline gives recommendations to improve the diagnosis, health outcomes, and care of people with disorders of consciousness. According to guideline, about 4 in 10 people who are thought to be unconscious are actually aware, and misdiagnosis can lead to inappropriate care decisions and poor health outcomes. An early and accurate diagnosis is important to determine the best treatment options.
Companion materials to the guideline are also available, including summaries of the guideline for family and caregivers and for clinicians.
What are disorders of consciousness?
Consciousness is the state of being awake and aware of one’s self and surroundings. Some people who experience a severe brain injury resulting from a trauma, heart attack, stroke, or other disease or illness may have a disorder of consciousness.
Disorders of consciousness can include coma and vegetative and minimally conscious states. A person in a coma is completely unconscious with no eye opening. A person in a vegetative state may open their eyes or appear awake for brief periods but shows no sign that they are aware of themselves or their surroundings. People in minimally conscious states have behaviors that show they are conscious, such as tracking people with their eyes or following an instruction to open their mouths, but the behaviors are often subtle and inconsistent.
People with disorders of consciousness will need ongoing, specialized care provided by experts in diagnosing and treating these conditions. Some people may remain permanently unconscious, others may regain their ability to function on their own and even return to work or school. About one in five will recover to the point that they can live at home and care for themselves without help, according to the guideline.
Learn more about Vegetative and Minimally Conscious States after Severe TBI as well as access other resources for people living with traumatic brain injuries from the NIDILRR-funded Model System Knowledge Translation Center.
Is there more research on disorders of consciousness?
The NIDILRR community has a long history of research and development in disorders of consciousness, particularly following traumatic brain injury (TBI). Follow the links below to explore past and present NIDILRR-funded projects as well as publications (peer-reviewed and non-peer-reviewed) from NIDILRR grantees. Some publications may be included in more than one area due to variations in terminology.
- NIDILRR projects focusing on diagnosis and treatment of individuals with disorders of consciousness (coma, consciousness, vegetative states)
- Publications from the NIDILRR community
- More research publications from the NARIC collection on disorders of consciousness (including international research).
If your family is looking for additional information and support for a loved one who has experienced a disorder of consciousness, we recommend these very informative resources:
- NARIC’s Librarians Picks for TBI and Stroke resources
- Brainline.org
- Brain Injury Association of America (and local affiliates) biausa.org
- What is a coma? (Kidshealth from Nemours) https://kidshealth.org/en/kids/coma.html
To learn more about the NIDILRR grantee community and NIDILRR-funded research, visit the Program Database to explore descriptions of current and completed projects.