For professionals

Abstract

To determine the point prevalence and characteristics of patients with locked-in syndrome (LIS), especially of the classic type, living in Dutch nursing homes, a cross-sectional study was conducted among Dutch nursing homes.

The classic form of LIS was defined according to the criteria of the U.S. Congress of Rehabilitation Medicine (1995). All Dutch long-term care organisations (n = 187) were asked whether they had patients with classic LIS as of 5 December 2011. Subsequently, the treating physicians in elderly care were contacted to pass on patient characteristics. Of all organizations, 91.4% responded, and 11 organizations reported a total of 12 patients.

After analyzing the questionnaires, it was determined that ten patients had LIS and two patients were characterized by a vegetative state. Only two patients met the criteria for classic LIS, while six patients presented with partial SIS. One of these patients was admitted to the nursing home after 5 December 2011 and is therefore excluded. LIS without an accompanying pontine lesion was observed in the remaining two patients.

For the first time, the prevalence of classic LIS has been determined at 0.7/10,000 somatic nursing home beds in all Dutch long-term care organisations. Possible explanations for this low prevalence may be Dutch home care or the influence of end-of-life decisions, such as euthanasia and withholding or withdrawing all medical treatments, including artificial nutrition and hydration. These alternative outcomes should be investigated in further studies.

Keywords
Locked-in syndrome, Prevalence, Nursing home, Paralysis, Long-term care