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

BMJ Open

Volumn 1, Issue 1, 2011, Pages

  Bruno, Marie Aurélie ^a   Bernheim, Jan L ^b   Ledoux, Didier ^a   Pellas, Frédéric ^c   Demertzi, Athena ^a   Laureys, Steven ^a  

^a UNIVERSITY OF LIÈGE   (Belgium)

^b FACULTY OF MEDICINE AND PHARMACY   (Belgium)

^c DEPARTMENT OF NEUROLOGY   (France)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 79955927699     PISSN: None     EISSN: 20446055     Source Type: Journal    
DOI: 10.1136/bmjopen-2010-000039     Document Type: Review

References (52)

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;76:205e9.
2. Bauer G, Gerstenbrand F, Rumpl E. Varieties of the locked-in syndrome. J Neurol 1979;221:77e91. (Pubitemid 9220262)
3. 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;18:435e44. (Pubitemid 37169668)
4. 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;84:862e7. (Pubitemid 36682334)
5. Leon-Carrion J, van Eeckhout P, Dominguez-Morales Mdel R. The locked-in syndrome: a syndrome looking for a therapy. Brain Inj 2002;16:555e69. (Pubitemid 34808741)
6. Lule D, Zickler C, Hacker S, et al. Life can be worth living in locked-in syndrome. Prog Brain Res 2009;177:339e51.
7. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999;48:977e88. (Pubitemid 29147322)
8. Laureys S, Pellas F, Van Eeckhout P, et al. The locked-in syndrome: what is it like to be conscious but paralyzed and voiceless? Prog Brain Res 2005;150:495e511. (Pubitemid 41381572)
9. Wood-Dauphinee S, Williams JI. Reintegration to Normal Living as a proxy to quality of life. J Chronic Dis 1987;40:491e502.
10. Daneski K, Coshall C, Tilling K, et al. Reliability and validity of a postal version of the Reintegration to Normal Living Index, modified for use with stroke patients. Clin Rehabil 2003;17:835e9. (Pubitemid 37483516)
11. Wood-Dauphinee SL, Opzoomer MA, Williams JI, et al. Assessment of global function: The Reintegration to Normal Living Index. Arch Phys Med Rehabil 1988;69:583e90.
12. Stark SL, Edwards DF, Hollingsworth H, et al. Validation of the Reintegration to Normal Living Index in a population of communitydwelling people with mobility limitations. Arch Phys Med Rehabil 2005;86:344e5. (Pubitemid 40215302)
13. Pang MY, Eng JJ, Miller WC. Determinants of satisfaction with community reintegration in older adults with chronic stroke: role of balance self-efficacy. Phys Ther 2007;87:282e91. (Pubitemid 46341069)
14. Carter BS, Buckley D, Ferraro R, et al. Factors associated with reintegration to normal living after subarachnoid hemorrhage. Neurosurgery 2000;46:1326e33; discussion 1333e24.
15. Bernheim JL. How to get serious answers to the serious question: "How have you been?": subjective quality of life (QOL) as an individual experiential emergent construct. Bioethics 1999;13:272e87. (Pubitemid 29364898)
16. May LA, Warren S. Measuring quality of life of persons with spinal cord injury: external and structural validity. Spinal Cord 2002;40:341e50. (Pubitemid 34756212)
17. Sprangers MA, Schwartz CE. Integrating response shift into healthrelated quality of life research: a theoretical model. Soc Sci Med 1999;48:1507e15. (Pubitemid 29254110)
18. Westerman MJ, The AM, Sprangers MA, et al. Small-cell lung cancer patients are just 'a little bit' tired: response shift and self-presentation in the measurement of fatigue. Qual Life Res 2007;16:853e61. (Pubitemid 46650887)
19. Westerman MJ, Hak T, Sprangers MA, et al. Listen to their answers! Response behaviour in the measurement of physical and role functioning. Qual Life Res 2008;17:549e58.
20. Bodur H, Ataman S, Rezvani A, et al. Quality of life and related variables in patients with ankylosing spondylitis. Qual Life Res. Published Online First: 27 October 2010. doi:10.1007/s11136- 010-9771-9.
21. Berges IM, Ottenbacher KJ, Kuo YF, et al. Satisfaction with quality of life poststroke: effect of sex differences in pain response. Arch Phys Med Rehabil 2007;88:413e17. (Pubitemid 46482430)
22. Skevington SM. Investigating the relationship between pain and discomfort and quality of life, using the WHOQOL. Pain 1998;76:395e406. (Pubitemid 28342749)
23. Donnelly C, Eng JJ. Pain following spinal cord injury: the impact on community reintegration. Spinal Cord 2005;43:278e82. (Pubitemid 40704989)
24. Schwartz CE, Andresen EM, Nosek MA, et al. Response shift theory: important implications for measuring quality of life in people with disability. Arch Phys Med Rehabil 2007;88:529e36. (Pubitemid 46482431)
25. de Haes JC, de Ruiter JH, Tempelaar R, et al. The distinction between affect and cognition in the quality of life of cancer patientsesensitivity and stability. Qual Life Res 1992;1: 315e22.
26. Chwalisz K, Diener E, Gallagher D. Autonomic arousal feedback and emotional experience: evidence from the spinal cord injured. J Pers Soc Psychol 1988;54:820e8.
27. Ryan RM, Deci EL. On happiness and human potentials: a review of research on hedonic and eudaimonic well-being. Annu Rev Psychol 2001;52:141e66. (Pubitemid 33705570)
28. Bernheim JL, Theuns P, Mazaheri M, et al. The potential of anamnestic comparative self-assessment (ACSA) to reduce bias in the measurement of subjective well-being. Journal of Happiness Studies 2006;7:227e50. (Pubitemid 43992150)
29. Brickman P, Coates D, Janoff-Bulman R. Lottery winners and accident victims: is happiness relative? J Pers Soc Psychol 1978;36:917e27.
30. Goering S. 'You say you're happy, but.': contested quality of life judgments in bioethics and disability studies. Journal of Bioethical Inquiry 2008;5:125e35.
31. Tonack M, Hitzig SL, Craven BC, et al. Predicting life satisfaction after spinal cord injury in a Canadian sample. Spinal Cord 2008;46:380e5. (Pubitemid 351630951)
32. Post MW, de Witte LP, van Asbeck FW, et al. Predictors of health status and life satisfaction in spinal cord injury. Arch Phys Med Rehabil 1998;79:395e401. (Pubitemid 28204617)
33. Cummins R. Normative life satisfaction: measurement issues and a homeostatic model. Soc Indicat Res 2003;64:225e56. (Pubitemid 37061355)
34. Calmels P, Bethoux F, Roche G, et al. [Evaluation of the handicap and the quality of life in spinal cord injuries: study in a population of 58 patients living at home] (In French). Ann Readapt Med Phys 2003;46:233e40. (Pubitemid 36807078)
35. Steadman-Pare D, Colantonio A, Ratcliff G, et al. Factors associated with perceived quality of life many years after traumatic brain injury. J Head Trauma Rehabil 2001;16:330e42. (Pubitemid 32730342)
36. Hammell KW. Exploring quality of life following high spinal cord injury: a review and critique. Spinal Cord 2004;42:491e502. (Pubitemid 39265323)
37. Kreuter M, Sullivan M, Dahllof AG, et al. Partner relationships, functioning, mood and global quality of life in persons with spinal cord injury and traumatic brain injury. Spinal Cord 1998;36: 252e61. (Pubitemid 28171215)
38. Hicken BL, Putzke JD, Novack T, et al. Life satisfaction following spinal cord and traumatic brain injury: a comparative study. J Rehabil Res Dev 2002;39:359e65.
39. Williams RM, Turner AP, Hatzakis M Jr, et al. Prevalence and correlates of depression among veterans with multiple sclerosis. Neurology 2005;64:75e80. (Pubitemid 40082940)
40. Crawford A, Hollingsworth HH, Morgan K, et al. People with mobility impairments: Physical activity and quality of participation. Disabil Health J 2008;1:7e13. (Pubitemid 351445376)
41. Johansson U, Hogberg H, Bernspang B. Participation in everyday occupations in a late phase of recovery after brain injury. Scand J Occup Ther 2007;14:116e25. (Pubitemid 46887879)
42. Fins JJ. Clinical pragmatism and the care of brain damaged patients: toward a palliative neuroethics for disorders of consciousness. Prog Brain Res 2005;150:565e82. (Pubitemid 41381577)
43. Schnakers C, Majerus S, Goldman S, et al. Cognitive function in the locked-in syndrome. J Neurol 2008;255:323e30.
44. Bernat JL. Ethical Issues in Neurology. 2nd edn. Boston: Butterworth Heinemann, 2002.
45. Kubler A, Neumann N. Brain-computer interfaces - the key for the conscious brain locked into a paralyzed body. Prog Brain Res 2005;150:513e25. (Pubitemid 41386462)
46. Smart CM, Giacino JT, Cullen T, et al. A case of locked-in syndrome complicated by central deafness. Nat Clin Pract Neurol 2008;4:448e53.
47. Anderson C, Dillon C, Burns R. Life-sustaining treatment and lockedin syndrome. Lancet 1993;342:867e8.
48. Patterson DR, Miller-Perrin C, McCormick TR, et al. When life support is questioned early in the care of patients with cervical-level quadriplegia. N Engl J Med 1993;328:506e9. (Pubitemid 23056445)
49. Anderson JF, Augoustakis LV, Holmes RJ, et al. End-of-life decisionmaking in individuals with Locked-in syndrome in the acute period after brainstem stroke. Intern Med J 2010;40:61e5.
50. Arnold D, Girling A, Stevens A, et al. Comparison of direct and indirect methods of estimating health state utilities for resource allocation: review and empirical analysis. BMJ 2009;339:1e8.
51. Bach JR, Tilton MC. Life satisfaction and well-being measures in ventilator assisted individuals with traumatic tetraplegia. Arch Phys Med Rehabil 1994;75:626e32. (Pubitemid 24173597)
52. Trail M, Nelson ND, Van JN, et al. A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. J Neurol Sci 2003;209:79e85. (Pubitemid 36398682)