Objective. To estimate the number of people in a prolonged disorder of consciousness (PDOC) who may need a formal best interests decision-making process to consider starting and/or continuing life-sustaining treatment each year in the population of a developed country. Method. Identification of studies on people with a prolonged disorder of consciousness giving information about incidence, and/or prevalence, and/or cause ,and/or location of long-term care. Sources included systematic reviews, a new search of Medline (April 2018), and a personal collection of papers. Validating information was sought from existing data on services. Results. There are few epidemiologically sound studies, most having bias and/or missing information. The best estimate of incidence of PDOC due to acute-onset disease is 2.6/100,000/year; the best estimate of prevalence is between 2.0 and 5.0/100,000. There is evidence that prevalence in the Netherlands is about 10% of that in other countries. The commonest documented causes are cerebral hypoxia, stroke, traumatic brain injury, and tumours. There is some evidence suggesting that dementia is a common cause, but PDOC due to progressive disorders has not been studied systematically. Most people receive long-term in nursing homes, but a significant proportion (10%-15%) may be cared for at home. Conclusion. Each year about 5/100,000 people will enter a prolonged state of unconsciousness from acute onset and progressive brain damage; and at any one time there may be 5/100,000 people in that state. However, the evidence is very limited in quality and quantity. The numbers may be greater.
Wade, Derick T.
Faculty of Health and Life Sciences\Department of Sport, Health Sciences and Social Work
Year of publication: 2018Date of RADAR deposit: 2018-05-10