References
- Simmons Z, Bremer BA, Robbins RA, Walsh SM, Fischer S. Quality of life in ALS depends on factors other than strength and physical function. Neurology. 2000;55:388–92.
- Robbins RA, Simmons Z, Bremer BA, Walsh SM, Fischer S. Quality of life in ALS is maintained as physical function declines. Neurology. 2001;56:442–4.
- Neudert C, Wasner M, Borasio GD. Patients’ assessment of quality of life instruments: a randomized study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis. J Neurol Sci. 2001;191:103–9.
- Jenkinson C, Fitzpatrick R. Reduced item set for the amyotrophic lateral sclerosis assessment questionnaire: development and validation of the ALSAQ-5. J Neurol Neurosurg Psychiatry. 2001;70:70–3.
- Bromberg MB, Forshew DA. Comparison of instruments addressing quality of life in patients with ALS and their caregivers. Neurology. 2002;58:320–2.
- Goldstein LH, Atkins L, Leigh PN. Correlates of quality of life in people with motor neuron disease (MND). Amyotroph Lateral Scler Other Motor Neuron Disord. 2002;3:123–9.
- Chio 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 Psychiatry. 2004;75:1597–601.
- 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.
- WHOQoL: Measuring Quality of Life. Geneva: World Health Organization; 1997.
- Felgoise SH, Stewart JL, Bremer BA, Walsh SM, Bromberg MB, Simmons Z. The SEIQoL-DW for assessing quality of life in ALS: strengths and limitations. Amyotroph Lateral Scler. 2009;10:456–62.
- Goldstein LH, Atkins L, Landau S, Brown R, Leigh PN. Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study. Psychol Med. 2006;36:865–75.
- Beukelman DR, Fager S, Ball L, Dietz A. AAC for adults with acquired neurological conditions: a review. Augment Altern Comm. 2007;23:30–42.
- Nichols-Larsen DS, Clark PC, Zerinque A, Greenspan A, Blanton S. Factors influencing stroke survivors’ quality of life during subacute recovery. Stroke. 2005;36:480–4.
- Moeller D, Carpenter C. Factors affecting quality of life for people who have experienced a stroke. Int J Ther Rehabil. 2013;20:2072
- Simmons Z, Felgoise SH, Bremer BA, Walsh SM, Hufford DJ, Bromberg MB, et al. The ALSSQoL: balancing physical and non-physical factors in assessing quality of life in ALS. Neurology. 2006;67:1659–64.
- Brooks BR, Miller RG, Swash M, Munsat TL, for the World Federation of Neurology Research Group on Motor Neuron Diseases. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord. 2000;1:293–9.
- The ALS CNTF Treatment Study (ACTS) Phase I-II Study Group. The amyotrophic lateral sclerosis functional rating scale: assessment of activities of daily living in patients with amyotrophic lateral sclerosis. Arch Neurol. 1996;53:141–7.
- Schwartz CE, Sprangers MA. Methodological approaches for assessing response shift in longitudinal health-related quality of life research. Soc Sci Med. 1999;48:1531–48.
- Carr AJ, Gibson B, Robinson PG. Measuring quality of life: is quality of life determined by expectations or experience? Br Med J. 2001;322:1240–3.
- Yardley L, Dibb B. Assessing subjective change in chronic illness: an examination of response shift in health related and goal-oriented subjective status. Psychol Health. 2007;22:813–28.
- Barclay R, Tate RB. Response shift recalibration and reprioritization in health related quality of life was identified prospectively in older men with and without stroke. J Clin Epidemiol. 2014;67:500–7.
- Andersen PM, Abrahams S, Borasio GD, de Carvalho M, Chio A, van Damme P, et al. EFNS task force on the clinical management of amyotrophic lateral sclerosis (MALS): revised report of an EFNS task force. Eur J Neurol. 2012;19:360–75.
- Miller RG, Brooks BR, Swain-Eng RJ, Basner RC, Carter GT, Casey P, et al. Quality improvement in neurology: amyotrophic lateral sclerosis quality measures. Neurology. 2013;81:2136–40.
- Doyle M, Phillips B. Trends in augmentative and alternative communication use by individuals with amyotrophic lateral sclerosis. Augment Altern Commun. 2001;17:167–78.
- Robarge KM. Communication management in amyotrophic lateral sclerosis: the role of the speech-language pathologist during disease progression. The Internet Journal of Allied Health Sciences and Practice 2009;7(2):ISSN 1540-580X (accessed May 3, 2015, at http://ijahsp.nova.edu/articles/Vol7Num2/pdf/robarge.pdf).
- Ball LJ, Fager S, Fried-Oken M. Augmentative and alternative communication for people with progressive neuromuscular disease. Phys Med Rehabil Clin N Am. 2012;23:689–99.
- Ball LJ, Beukelman DR, Pattee GL. Acceptance of augmentative and alternative communication technology by persons with amyotrophic lateral sclerosis. Augmentative and Alternative Communication. 2004;20: 113–22.
- Hwang CS, Weng HH, Wang LF, Tsai CH, Chang HT. An eye-tracking assistive device improves the quality of life for ALS patients and reduces the caregivers’ burden. J Mot Behav. 2014;46:233–8.
- 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.
- Körner S, Siniawki M, Kollewe K, Rath KJ, Krampfl K, Zapf A, et al. Speech therapy and communication device: impact on quality of life and mood in patients with amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14:20–5.
- Stephens HE, Felgoise S, Young J, Simmons Z. Multidisciplinary ALS clinics in the USA: a comparison of those who attend and those who do not. Amyotroph Lateral Scler Frontotemporal Degener. (Accepted article, DOI: 10.3109/21678421.2014.994530).
- Mak JN, Wolpaw JR. Clinical applications of brain-computer interfaces: current state and future prospects. IIEE Rev Biomed Eng. 2009;2:187–99.
- Birbaumer N, Cohen LG. Brain-computer interfaces: communication and restoration of movement in paralysis. J Physiol. 2007;579:621–36.
- Daly JJ, Wolpaw JR. Brain-computer interfaces in neurological rehabilitation. Lancet Neurol. 2008;7:1032–43.