How many patients in a prolonged disorder of consciousness might need a best interests meeting about starting or continuing gastrostomy feeding?

Abstract

Abstract. 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.

The impact of prolonged disorders of consciousness on family caregivers’ quality of life – A scoping review

“…People displaying an impairment in one or both elements of consciousness will receive a DoC diagnosis, with a diagnosis of prolonged disorder of consciousness (PDoC) currently given in the UK to anyone who remains in a DoC for longer than a month (Royal College of Physicians, 2020 ). It is estimated that the PDoC incidence and prevalence rates in England and Wales are approximately 5 people per 100,000 a year (Wade, 2018 ).…”

Emerging Treatments for Disorders of Consciousness in Paediatric Age

“…Arousal without awareness Incidence: ~2.6/100,000 people [9]. Prevalence: ~2.0/100,000 to ~5.0/100,000 people, depending on national protocols [9].…”

Two-year outcomes of patients with prolonged disorders of consciousness: a prospective cohort study in Russian Federation

“…Prevalence of pDOC in the world waivers around 0.5-6 cases per 100,000 population (9,10), the number of new cases constitutes 2.5 per 100,000 population per year and tend to increase (11). Even though the number of pDOC patients is commonly not significant, the presence of some specific characteristics requires serious attention to this category.…”