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. 2011 Feb 23;1(1):e000039.
doi: 10.1136/bmjopen-2010-000039.

A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority

Marie-Aurélie Bruno  1 , Jan L Bernheim, Didier Ledoux, Frédéric Pellas, Athena Demertzi, Steven Laureys
Affiliations

A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority

Marie-Aurélie Bruno et al. BMJ Open. .

Abstract

Objectives Locked-in syndrome (LIS) consists of anarthria and quadriplegia while consciousness is preserved. Classically, vertical eye movements or blinking allow coded communication. Given appropriate medical care, patients can survive for decades. We studied the self-reported quality of life in chronic LIS patients. Design 168 LIS members of the French Association for LIS were invited to answer a questionnaire on medical history, current status and end-of-life issues. They self-assessed their global subjective well-being with the Anamnestic Comparative Self-Assessment (ACSA) scale, whose +5 and -5 anchors were their memories of the best period in their life before LIS and their worst period ever, respectively. Results 91 patients (54%) responded and 26 were excluded because of missing data on quality of life. 47 patients professed happiness (median ACSA +3) and 18 unhappiness (median ACSA -4). Variables associated with unhappiness included anxiety and dissatisfaction with mobility in the community, recreational activities and recovery of speech production. A longer time in LIS was correlated with happiness. 58% declared they did not wish to be resuscitated in case of cardiac arrest and 7% expressed a wish for euthanasia. Conclusions Our data stress the need for extra palliative efforts directed at mobility and recreational activities in LIS and the importance of anxiolytic therapy. 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.

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Conflict of interest statement

Competing interests: None.

Figures

Figure 1
Figure 1
Anamnestic Comparative Self-Assessment scale. LIS, locked-in syndrome.
Figure 2
Figure 2
Participation. LIS, locked-in syndrome; QoL, quality of life; SWB, subjective well-being.
Figure 3
Figure 3
Distribution of Anamnestic Comparative Self-Assessment ratings in locked-in syndrome.
See this image and copyright information in PMC

References

    1. American Congress of Rehabilitation Medicine Recommendations for use of uniform nomenclature pertinent to patients with severe alterations of consciousness. Arch Phys Med Rehabil 1995;76:205–9 - PubMed
    1. Bauer G, Gerstenbrand F, Rumpl E. Varieties of the locked-in syndrome. J Neurol 1979;221:77–91 - PubMed
    1. Doble JE, Haig AJ, Anderson C, et al. Impairment, activity, participation, life satisfaction, and survival in persons with locked-in syndrome for over a decade: follow-up on a previously reported cohort. J Head Trauma Rehabil 2003;18:435–44 - PubMed
    1. Casanova E, Lazzari RE, Lotta S, et al. Locked-in syndrome: improvement in the prognosis after an early intensive multidisciplinary rehabilitation. Arch Phys Med Rehabil 2003;84:862–7 - PubMed
    1. Leon-Carrion J, van Eeckhout P, Dominguez-Morales Mdel R. The locked-in syndrome: a syndrome looking for a therapy. Brain Inj 2002;16:555–69 - PubMed