The impact of fatigue and psychosocial variables on quality of life for patients with motor neuron disease

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.
   PubMed Web of Science ®Google Scholar
• Goldstein LH, Atkins L, Leigh PN. Correlates of quality of life in people with motor neuron disease (MND). Amyotrophic Lateral Scler Other Motor Neuron Disord. 2002;3:123–9.
   PubMed Web of Science ®Google Scholar
• 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.
   PubMed Web of Science ®Google Scholar
• 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 Neurosur Ps. 2004;75: 1597–601.
   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
• Matuz T, Birbaumer N, Hautzinger M, Kubler A. Coping with amyotrophic lateral sclerosis: an integrative view. J Neurol Neurosur Ps. 2010;81:893–8.
   PubMed Web of Science ®Google Scholar
• Lou JS, Reeves A, Benice T, Sexton G. Fatigue and depression are associated with poor quality of life in ALS. Neurology. 2003;60:122–3.
   PubMed Web of Science ®Google Scholar
• Ramirez C, Piemonte MEP, Callegaro D, Da Silva HCA. Fatigue in amyotrophic lateral sclerosis: Frequency and associated factors. Amyotroph Lateral Scler. 2008;9:75–80.
   PubMed Web of Science ®Google Scholar
• Young JM, McNicoll P. Against all odds: positive life experiences of people with advanced amyotrophic lateral sclerosis. Health Soc Work. 1998;23:35–43.
   PubMed Web of Science ®Google Scholar
• Hugel H, Pih N, Dougan CP, Rigby S, Young CA. Identifying poor adaptation to a new diagnosis of motor neuron disease: a pilot study into the value of an early patient-led interview. Amyotroph Lateral Scler. 2010;11:104–9.
   PubMed Web of Science ®Google Scholar
• Rusli BN, Edimansyah BA, Naing L. Working conditions, self-perceived stress, anxiety, depression and quality of life: a structural equation modelling approach. BMC Public Health. 2008;8.
   PubMedGoogle Scholar
• Karabatsos G. The Rasch model, additive conjoint measurement, and new models of probabilistic measurement theory. J Appl Meas. 2001;2:389–423.
   PubMedGoogle Scholar
• McLeod JE, Clarke DM. A review of psychosocial aspects of motor neuron disease. J Neurol Sci. 2007;258:4–10.
   PubMed Web of Science ®Google Scholar
• Rasch G. Probabilistic models for some intelligence and attainment tests. Chicago: The University of Chicago Press; 1960.
   Google Scholar
• Gibbons CJ, Mills RJ, Thornton EW, Ealing J, Mitchell JD, Shaw PJ, et al. Rasch analysis of the Hospital Anxiety and Depression Scale (HADS) for use in motor neuron disease. Health Qual Life Outcomes. 2011;9:82.
   PubMed Web of Science ®Google Scholar
• Gibbons CJ, Mills RJ, Thornton EW, Ealing J, Mitchell JD, Shaw PJ, et al. Development of a patient-reported outcome measure for fatigue in motor neuron disease: The Neurological Fatigue Index (NFI-MND). Health Qual Life Outcomes. 2011;9:101.
   PubMed Web of Science ®Google Scholar
• Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand. 1983;67:361–70.
   PubMed Web of Science ®Google Scholar
• Lee JN, Rigby SA, Burchardt F, Thornton EW, Dougan C, Young CA. Quality of life issues in motor neuron disease: the development and validation of a coping strategies questionnaire, the MND Coping Scale. J Neurol Sci. 2001; 191:79–85.
   PubMed Web of Science ®Google Scholar
• Rigby SA, Thornton EW, Tedman S, Burchardt F, Young CA, Dougan C. Quality of life assessment in MND: development of a Social Withdrawal Scale. J Neurol Sci. 1999; 169:26–34.
   PubMed Web of Science ®Google Scholar
• Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS functional rating scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169:13–21.
   PubMed Web of Science ®Google Scholar
• Skevington SM, Lotfy M, O’Connell KA. The World Health Organization’s WHO QoL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHO QoL group. Qual Life Res. 2004;13:299–310.
   PubMed Web of Science ®Google Scholar
• SPSS (program). Chicago, IL: SPSS 2010.
   Google Scholar
• Rasch Unitary Measurement Model 2020 (RUMM2020) (program). 4.1 Build 194 version. Perth, Australia: RUMM Laboratory Pty., 2000.
   Google Scholar
• Fan X, Thompson B, Wang L. Effects of sample size, estimation methods, and model specification on structural equation modelling fit indexes. Struct Equ Modeling. 1999; 6:56–83.
   Web of Science ®Google Scholar
• Jöreskog K, Sörbom D. Structural Equation Modeling with the SIMPLIS Command Language. Chicago, IL.: Scientific Software International Inc., 1993.
   Google Scholar
• Arbuckle JL. AMOS 6.0 user’s guide.Chicago: SPSS, 2005.
   Google Scholar
• Hu L-t, Bentler PM. Cutoff Criteria for Fit Indexes in Covariance Structure Analysis: Conventional Criteria Versus New Alternatives. Struct Equ Modeling. 1999; 6:1–55.
   Web of Science ®Google Scholar
• Schumacker RE, Lomax RG. A beginner’s guide to structural equation modelling. Second edn. Hillsdale, NJ: Erlbaum; 2004.
   Google Scholar
• Kim KH. The relation among fit indexes, power, and sample size in structural equation modelling. Struct Equ Modeling. 2005;12:368–90.
   Web of Science ®Google Scholar
• Jackson DL. Revisiting sample size and number of parameter estimates: some support for the N:q hypothesis. Struct Equ Modeling. 2003;10:128–41.
   Web of Science ®Google Scholar
• Munck IME. Model building in comparative education: application of the LISREL method to cross-national survery data. Stockholm: Almqvist & Wissel; 1979.
   Google Scholar
• Mathieu JE, Tannenbaum SI, Salas E. Influences of individual and situational characteristics on measures of training effectivness Acad Manage J. 1992;35:828–47.
   Google Scholar
• Klein RB. Principles and practice of structural equation modeling (2nd edn). New York: Guildford Press; 2005.
   Google Scholar
• Alonso A, Logroscino G, Jick S, Hernan M. Incidence and lifetime risk of motor neuron disease in the United Kingdom: a population based study. Eur J Neurol. 2009; 16:745–51.
   PubMed Web of Science ®Google Scholar
• Gibbons CJ, Thornton EW, Young CA. The lived experience of fatigue in MND: a qualitative study from the patient’s perspective. Amyotroph Lateral Scler. 2010;11:144.
   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 Pall Med. 2004;7:551–7.
   PubMedGoogle Scholar
• Pagnini F, Lunetta C, Rossi G, Banfi P, Gorni K, Cellotto N, et al. Existential well-being and spirituality of individuals with amyotrophic lateral sclerosis is related to psychological well-being of their caregivers. Amyotroph Lateral Scler. 2011;12:105–8.
   PubMed Web of Science ®Google Scholar
• Ledesma D, Kumano H. Mindfulness‐based stress reduction and cancer: a meta‐analysis. Psycho-oncology. 2009;18: 571–9.
   PubMed Web of Science ®Google Scholar
• Bagozzi RP, Edwards JR. A general approach for representing constructs in organizational research. Organ Res Met. 1998;1:45–87.
   Web of Science ®Google Scholar
• Ganzini L, Johnston WS, McFarland BH, Tolle SW, Lee MA. Attitudes of patients with amyotrophic lateral sclerosis and their caregivers toward assisted suicide. N Engl J Med. 1998;339:967–73.
   PubMed Web of Science ®Google Scholar
• Plahuta JM, McCulloch BJ, Kasarskis EJ, Ross MA, Walter RA, McDonald ER. Amyotrophic lateral sclerosis and hopelessness: psychosocial factors. Social Sci Med. 2002; 55:2131.
   PubMed Web of Science ®Google Scholar
• Pagnini F, Simmons Z, Corbo M, Molinari E. Amyotrophic lateral sclerosis: time for research on psychological intervention?. Amyotroph Lateral Scler. 2012;13:416–7.
   PubMed Web of Science ®Google Scholar