The prevalence and characteristics of patients with classic locked-in syndrome in Dutch nursing homes

To establish the point prevalence and characteristics of patients with locked-in syndrome (LIS), particularly of the classic type, residing in Dutch nursing homes, a cross-sectional survey of Dutch nursing homes was conducted. The classic form of LIS was defined according to the criteria of the American Congress of Rehabilitation Medicine (1995). All Dutch long-term care organisations (n = 187) were asked if they had any patients with classic LIS as of December 5, 2011. The treating Elderly Care Physicians were then contacted to provide patient characteristics. Of all organisations, 91.4 % responded, and 11 organisations reported a total of 12 patients. After analysing the questionnaires, it was determined that ten patients had LIS, and two patients were characterised with vegetative state. Only two patients met the criteria for classic LIS, while six patients showed partial LIS. One of these patients was admitted to the nursing home after December 5, 2011, and was therefore, excluded. LIS without accompanying pontine lesion was observed in the remaining two patients. For the first time, the prevalence of classic LIS has been established at 0.7/10,000 somatic nursing home beds in all Dutch long-term care organisations. Possible explanations for this low prevalence could be the Dutch provision of home care or the influence of end-of-life decisions, such as euthanasia and withholding or withdrawing all medical treatment, including artificial nutrition and hydration. These alternate outcomes should be explored in further studies.