Usability of eyetracking computer systems and impact on psychological wellbeing in patients with advanced amyotrophic lateral sclerosis

References

• Spataro R, Bono V, Marchese S, La Bella V. Tracheostomy mechanical ventilation in patients with amyotrophic lateral sclerosis: clinical features and survival analysis. J Neurol Sci. 2012;323:66–70.
   PubMed Web of Science ®Google Scholar
• Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, Van Damme P, et al. EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) - revised report of an EFNS task force. Eur J Neurol. 2012;19:360–75.
   PubMed Web of Science ®Google Scholar
• Chio A, Logroscino G, Hardiman O, Swingler R, Mitchell D, Beghi E, et al. Prognostic factors in ALS: a critical review. Amyotroph Lateral Scler. 2009;10:310–23.
   PubMed Web of Science ®Google Scholar
• Rousseau MC, Pietra S, Nadji M, Billette de Villemeur T. Evaluation of quality of life in complete locked-in syndrome patients. J Palliat Med. 2013;16:1455–8.
   PubMed Web of Science ®Google Scholar
• Montuschi A, Iazzolino B, Calvo A, Moglia C, Lopiano L, Restagno G, et al. Cognitive correlates in amyotrophic lateral sclerosis: a population-based study in Italy. J Neurol Neurosurg Psychiatry. 2015;86:168–73.
   PubMed Web of Science ®Google Scholar
• Bensch M, Martens S, Halder S, Hill J, Nijboer F, Ramos A, et al. Assessing attention and cognitive function in completely locked-in state with event-related brain potentials and epidural electrocorticography. J Neural Eng. 2014;11:026006.
   PubMed Web of Science ®Google Scholar
• Lakerveld J, Kotchoubey B, Kubler A. Cognitive function in patients with late stage amyotrophic lateral sclerosis. J Neurol Neurosurg Psychiatr. 2008;79:25–9.
   PubMed Web of Science ®Google Scholar
• Proudfoot M, Menke RAL, Sharma R, Berna CM, Hicks S, Kennard C, et al. Eye-tracking in amyotrophic lateral sclerosis: a longitudinal study of saccadic and cognitive tasks. Amyotroph Lateral Scler Frontotemporal Degener. 2015;17:101–11.
   PubMed Web of Science ®Google Scholar
• Spataro R, Ciriacono M, Manno C, La Bella V. The eye-tracking computer device for communication in amyotrophic lateral sclerosis. Acta Neurol Scand. 2014;130:40–5.
   PubMed Web of Science ®Google Scholar
• Ball L, Nordness A, Fager S, Kersch K, Pattee G, Beukelmann D. Eye gaze access of AAC technology for persons with amyotrophic lateral sclerosis. J Med Speech Lang Pathol. 2010;18:11–23.
   Web of Science ®Google Scholar
• Londral A, Pinto A, Pinto S, Azevedo L, De Carvalho M. Quality of life in amyotrophic lateral sclerosis patients and caregivers: impact of assistive communication from early stages. Muscle Nerve. 2015;52:933–41.
   PubMed Web of Science ®Google Scholar
• Hwang CS, Weng HH, Tsai CH, Chang HT. An eye-tracking assistive device improves quality of life for ALS patients and reduces caregivers' burden. J Mot Behav. 2014;46:233–8.
   PubMed Web of Science ®Google Scholar
• Körner S, Kollewe K, Abdulla S, Zapf A, Dengler R, Petri S. Interaction of physical function, quality of life and depression in Amyotrophic lateral sclerosis: characterization of a large patient cohort. BMC Neurol. 2015;15:84.
   PubMed Web of Science ®Google Scholar
• Neudert C, Wasner M, Borasio GD. Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis. J Palliat Med. 2004;7:551–7.
   PubMedGoogle Scholar
• Chiò A, Gauthier A, Montuschi A, Calvo A, Di Vito N, Ghiglione P, et al. A cross sectional study on determinants of quality of life in ALS. J Neurol Neurosurg Psychiatr. 2004;75:1597–601.
   PubMed Web of Science ®Google Scholar
• Zamietra K, Lehman EB, Felgoise SH, Walsh SM, Stephens HE, Simmons Z. Non-invasive ventilation and gastrostomy may not impact overall quality of life in patients with ALS. Amyotroph Lateral Scler. 2012;13:55–8.
   PubMed Web of Science ®Google Scholar
• Rousseau MC, Pietra S, Blaya J, Catala A. Quality of life of ALS and LIS patients with and without invasive mechanical ventilation. J Neurol. 2011;258:1801–4.
   PubMed Web of Science ®Google Scholar
• Rousseau M-C, Baumstarck K, Alessandrini M, Blandin V, Billette de Villemeur T, Auquier P. Quality of life in patients with locked-in syndrome: evolution over a 6-year period. Orphanet J Rare Dis. 2015;10:88.
   PubMed Web of Science ®Google Scholar
• Bruno M-A, Bernheim JL, Ledoux D, Pellas F, Demertzi A, Laureys S. A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority. BMJ Open. 2011;1:e000039.
   PubMed Web of Science ®Google Scholar
• Snoeys L, Vanhoof G, Manders E. Living with locked-in syndrome: an explorative study on health care situation, communication and quality of life. Disabil Rehabil. 2013;35:713–18.
   PubMed Web of Science ®Google Scholar
• Linse K, Ruger W, Joos M, Schmitz-Peiffer H, Storch A, Hermann A. Eye-tracking-based assessment suggests preserved well-being in locked-in patients. Ann Neurol. 2017;81:310–15.
   PubMed Web of Science ®Google Scholar
• Chiò A, Gauthier A, Calvo A, Ghiglione P, Mutani R. Caregiver burden and patients' perception of being a burden in ALS. Neurology. 2005;64:1780–2.
   PubMed Web of Science ®Google Scholar
• Kaub-Wittemer D, Steinbüchel N, Wasner M, Laier-Groeneveld G, Borasio GD. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. J Pain Symptom Manage. 2003;26:890–6.
   PubMed Web of Science ®Google Scholar
• Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology. 2007;68:923–6.
   PubMed Web of Science ®Google Scholar
• Hammer EM, Häcker S, Hautzinger M, Meyer TD, Kübler A. Validity of the ALS-Depression-Inventory (ADI-12)— A new screening instrument for depressive disorders in patients with amyotrophic lateral sclerosis. J Affect Disord. 2008;109:213–19.
   PubMed Web of Science ®Google Scholar
• O'Boyle CA, Browne J, Hickey A, McGee H, Joyce CRB. Manual for the SEIQoL-DW. Dublin: Department of Psychology, Royal College of Surgeons in Ireland; 1996.
   Google Scholar
• Caligari M, Godi M, Guglielmetti S, Franchignoni F, Nardone A. Eye tracking communication devices in amyotrophic lateral sclerosis; impact on disability and quality of life. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14:546–52.
   PubMed Web of Science ®Google Scholar
• Nakayama Y, Shimizu T, Mochizuki Y, Hayashi K, Matsuda C, Nagao M, et al. Predictors of impaired communication in amyotrophic lateral sclerosis patients with tracheostomy-invasive ventilation. Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:38–46.
   PubMed Web of Science ®Google Scholar
• Hogden A. Optimizing patient autonomy in amyotrophic lateral sclerosis: inclusive decision-making in multidisciplinary care. Neurodegener Dis Manag. 2014;4:1–3.
   PubMedGoogle Scholar
• Matuz T, Birbaumer N, Hautzinger M, Kübler A. Psychosocial adjustment to ALS: a longitudinal study. Front Psychol. 2015;6:1197.
   PubMed Web of Science ®Google Scholar
• Laureys S, Pellas F, Van Eeckhout P, Ghorbel S, Schnakers C, Perrin F, et al. The locked-in syndrome: what is it like to be conscious but paralyzed and voiceless? Progr Brain Res. 2005;150:495--611.
   PubMed Web of Science ®Google Scholar
• Lulé D, Zickler C, Häcker S, Bruno MA, Demertzi A, Pellas F, et al. Life can be worth living in locked-in syndrome. Prog Brain Res. 2009;177:339–51.
   PubMed Web of Science ®Google Scholar
• Ozanne AO, Graneheim UH, Strang S. Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients. J Clin Nurs. 2013;22:2141–9.
   PubMed Web of Science ®Google Scholar
• McDonald ER, Wiedenfeld SA, Hillel A, Carpenter CL, Walter RA. Survival in amyotrophic lateral sclerosis. The role of psychological factors. Arch Neurol. 1994;51:17–23.
   PubMed Web of Science ®Google Scholar