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A Survey on Self-Assessed Well-Being in a Cohort of Chronic Locked-In Syndrome Patients: Happy Majority, Miserable Minority

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A Survey on Self-Assessed Well-Being in a Cohort of Chronic Locked-In Syndrome Patients: Happy Majority, Miserable Minority Open Access Research BMJ Open: first published as 10.1136/bmjopen-2010-000039 on 23 February 2011. Downloaded from A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority Marie-Aure´lie Bruno,1 Jan L Bernheim,2 Didier Ledoux,1 Fre´de´ric Pellas,3 Athena Demertzi,1 Steven Laureys1 To cite: Bruno M-A, ABSTRACT ARTICLE SUMMARY Bernheim JL, Ledoux D, et al. Objectives: Locked-in syndrome (LIS) consists of A survey on self-assessed anarthria and quadriplegia while consciousness is Article focus well-being in a cohort of preserved. Classically, vertical eye movements or - To describe chronic locked-in patients’ subjective chronic locked-in syndrome blinking allow coded communication. Given patients: happy majority, well-being and identify factors that are associ- miserable minority. appropriate medical care, patients can survive for ated with high or low overall subjective well- BMJ Open 2011;1:e000039. decades. We studied the self-reported quality of life in being. doi:10.1136/bmjopen-2010- chronic LIS patients. - To evaluate the degree to which locked-in 000039 Design: 168 LIS members of the French Association patients are able to return to a normal life. for LIS were invited to answer a questionnaire on - To assess the views of locked-in patients on < Prepublication history for medical history, current status and end-of-life issues. end-of-life issues. this paper is available online. They self-assessed their global subjective well-being To view these files please with the Anamnestic Comparative Self-Assessment Key messages visit the journal online (http:// - (ACSA) scale, whose +5 and À5 anchors were their Although most chronic locked-in patients self- bmjopen.bmj.com). memories of the best period in their life before LIS and report severe restrictions in community reintegra- their worst period ever, respectively. tion, the majority profess good subjective Received 15 December 2010 well-being, in line with the notion that patients Accepted 14 January 2011 Results: 91 patients (54%) responded and 26 with severe disabilities may report a good quality were excluded because of missing data on quality http://bmjopen.bmj.com/ of life despite being socially isolated or having This final article is available of life. 47 patients professed happiness (median major difficulties in activities of daily living. for use under the terms of ACSA +3) and 18 unhappiness (median ACSA À4). - 28% of our locked-in patients declared unhappi- the Creative Commons Variables associated with unhappiness included Attribution Non-Commercial ness. Variables associated with unhappiness anxiety and dissatisfaction with mobility in the 2.0 Licence; see were dissatisfaction with mobility in the commu- community, recreational activities and recovery http://bmjopen.bmj.com nity, with recreational activities and with capacity of speech production. A longer time in LIS was to face up to life events. Shorter time in locked- correlated with happiness. 58% declared they did in, anxiety and non-recovery of speech produc- not wish to be resuscitated in case of cardiac tion were also associated with unhappiness. on September 24, 2021 by guest. Protected copyright. arrest and 7% expressed a wish for 1Coma Science Group, - The principal clinical conditions for requests for euthanasia. Cyclotron Research Centre euthanasia or physician-assisted death to be Conclusions: Our data stress the need for extra and Neurology Department, legally valid are unbearable suffering and irre- palliative efforts directed at mobility and recreational University and University versibility of the situation; however, irreversibility Hospital of Lie`ge, Lie`ge, activities in LIS and the importance of anxiolytic cannot be ascertained until the patient’s subjec- Belgium therapy. Recently affected LIS patients who wish to die 2 tive well-being has reached a steady state, which Department of Human should be assured that there is a high chance they will may take up to a year. Ecology and End-of-Life Care regain a happy meaningful life. End-of-life decisions, Research Group, Faculty of including euthanasia, should not be avoided, but Medicine and Pharmacy, a moratorium to allow a steady state to be reached Vrije Universiteit Brussel, 1 should be proposed. blinking. Most often LIS is caused by an Brussels, Belgium acute (vascular) anterior pontine brainstem 3Me´decine Re´e´ducative, ˆ lesion. The syndrome can be subdivided on Hopital Caremeau, CHU 2 Nıˆmes, Nıˆmes and the basis of motor disability : ‘classic’ LIS is Association for Locked-in characterised by quadriplegia and aphonia Syndrome (ALIS), Paris, INTRODUCTION with coded communication by vertical eye France Locked-in syndrome (LIS) is defined by movement or blinking; ‘incomplete’ LIS Correspondence to quadriplegia (or quadriparesis) and aphonia patients have remnants of voluntary motion Professor Steven Laureys; (or severe hypophonia) with a primary mode other than vertical eye movement; and ‘total’ [email protected] of communication by eye movements or LIS is defined by complete immobility, Bruno M-A, Bernheim JL, Ledoux D, et al. BMJ Open 2011;1:e000039. doi:10.1136/bmjopen-2010-000039 1 Self-assessed well-being in locked-in syndrome BMJ Open: first published as 10.1136/bmjopen-2010-000039 on 23 February 2011. Downloaded from degree to which a patient has been able to return to Article summary a normal life. The RNLI is an 11-item scale that covers Article focus areas such as participation in recreational and social Strengths and limitations of this study activities and movement within the community, and how - This study is the largest survey of chronic locked-in syndrome comfortable the individual is in his or her role in the patients ever performed and assesses the patients’ own self- family and with other relationships. Given the specific assessed quality of life, general well-being and end-of-life constraint of eye-coded communication in the surveyed wishes. The clinical and ethical implications are evident and LIS patients, instead of the visual analogue scale11 important for the medical community at large. a 4-point Likert scale was used as described elsewhere,13 - We also identify variables associated with unhappiness that can where a value of 1 was assigned to ‘no’, 2 to ‘rather no’, 3 be improved and permit evidence-based policy changes in the to ‘rather yes’ and 4 to ‘yes’. The scores were normalised management of these challenging and vulnerable patients. - to 100, with a score of 100 indicating that the partici- Our study had a low response rate and may be subject to e selection bias, and the results might therefore not be pants were fully satisfied, scores of 60 99 indicating mild representative of chronic LIS patients in general since all to moderate restrictions in self-perceived community participants were members of a patient association (ie, reintegration, and scores less than 60 indicating severe Association of Locked-in Syndrome, ALIS), indicating restrictions in self-perceived community reintegration, as a stable condition and possibly a degree of social integration. previously reported.14 Overall SWB was rated by means Nonetheless, as discussed in the article, quality of life research of the Anamnestic Comparative Self-Assessment has many methodological pitfalls, especially in this low- (ACSA)15 scale, whose biographical +5 and À5 scale incidence pathology with limited and difficult communication. anchors were the patients’ memories of the best period in their life before LIS and their worst period ever (figure 1). Participants were also asked about the pres- including all eye movements. Once a patient is medically ence of depressive symptoms (yes, no), pain and anxiety stabilised in LIS, the 10-year survival is more than 80%.3 (none, moderate, extreme) and end-of-life issues: With intensive rehabilitation,4 many classic LIS patients suicidal thoughts (never, occasionally, often), resuscita- may evolve to incomplete LIS, with voluntary control of tion in case of cardiac arrest (yes, no) and euthanasia the head, fingers or foot and sometimes recovery of (envisaged, never envisaged). Completion of the anon- speech production.5 Nearly all chronic LIS patients ymous questionnaire was voluntary and taken as consent remain dependent on others for activities of daily living. for participation in the survey. The study was approved Physicians and caregivers may tend to consider that LIS by the ethics committee of the Faculty of Medicine of the patients will die anyway3 or would prefer to die if they University of Lie`ge. knew what the clinicians (think they) know.6 On the http://bmjopen.bmj.com/ other hand, it is known that people with severe persistent Statistical analysis disability tend to self-report good subjective well-being Data were analysed using Stata 10.0 (Stata, 2007, Stata (SWB)dthe ‘disability paradox’.7 A previous study Statistical Software, TX, USA). The normality distribu- assessing the quality of life (QoL) in 15 LIS patients tion of continuous variables was assessed using Shapir- showed that they reported normal mental and personal oeWilk tests. For the descriptive analyses, we used general health despite maximal restriction in physical subject counts and percentages for categories, calcu- activities.8 The objective of this study is to describe lating mean6SD or median with IQR for continuous chronic LIS patients’ SWB and their views on end-of-life on September 24, 2021 by guest. Protected copyright. issues, and to identify factors that are associated with high or low overall SWB. METHODS Participants and procedures In collaboration with the French association for LIS (ALIS; http://alis-asso.fr/), a non-profit association created in 1997 to help LIS patients and their families, 168 patients who were members of LIS were invited (in January 2008) by letter to fill in a structured question- naire, aided by the patient’s proxy. The questionnaire included items about socio-demographic (age, gender, educational level, place and condition of living, religi- osity, net monthly household income), clinical (aeti- ology and duration of LIS, level of speech production and motor recovery) and QoL and SWB variables.
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