Wellbeing and Locked-in Syndrome; Majority Happy, Unhappy Minority

A survey into the wellbeing of patients with chronic LIS patients found that the majority of those surveyed were happy and only a small minority very unhappy.

Marie-Aurélie Bruno, PhD, neuropsychologist of the University of Mons-Hainaut, a lead researcher commented –

We studied the self-reported quality of life in chronic LIS patients. A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients showed that the majority were happy and only a small minority miserable.”

Locked-in syndrome (LIS) consists of loss of the motor ability that enables speech and the total or partial loss of the limbs and torso, while consciousness is preserved. Typically, eye movements or blinking allow patients with LIS to communicate with other through coded communication. Locked In Syndrome patients can survive for decades with the appropriate medical care.

168 LIS patients were invited to answer a questionnaire on medical history, current status and end-of-life issues. Each patient self-assessed their subjective well-being with the Anamnestic Comparative Self-Assessment (ACSA) scale. +5 and −5 anchors in the scale represented LIS patient’s memories of the best period in their life before LIS and their worst period ever, respectively.

91 patients (54%) responded
26 were excluded because of missing data on quality of life.
47 patients professed happiness (median ACSA +3)
18 unhappiness (median ACSA −4).

Variables associated with unhappiness included:

  • anxiety and dissatisfaction with mobility in the community
  • recreational activities
  • recovery of speech production.

A longer time in Locked In Syndrome was correlated with greater levels of happiness.
The data stressed the need for extra mobility and recreational activities in LIS and the importance of anxiety relieving therapy.

Marie-Aurélie Bruno, PhD, neuropsychologist said,

Recently affected LIS patients who wish to die should be assured that there is a high chance they will regain a happy meaningful life. End-of-life decisions, including euthanasia, should not be avoided, but a moratorium to allow a steady state to be reached should be proposed.

The happy and unhappy groups did not differ regarding socio-demographic, physical and functional variables including religion, living at home or with a partner, income, education, physical care and feeling comfortable in the company of others.

This study is the largest survey of chronic locked-in syndrome patients ever performed and assesses the patients’ own self-assessed quality of life, general well-being and end-of-life wishes.


Full report – PDF http://bmjopen.bmj.com/content/1/1/e000039.full.pdf+html