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

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Volumn 14, Issue 7-8, 2013, Pages 537-545

  Gibbons, Chris ^a,b   Thornton, Everard ^c   Ealing, John ^d   Shaw, Pamela ^e   Talbot, Kevin ^f   Tennant, Alan ^g   Young, Carolyn ^a  

^a WALTON CENTRE FOR NEUROLOGY AND NEUROSURGERY   (United Kingdom)

^b UNIVERSITY OF MANCHESTER   (United Kingdom)

^c UNIVERSITY OF LIVERPOOL   (United Kingdom)

^d SALFORD ROYAL NHS FOUNDATION TRUST   (United Kingdom)

^e UNIVERSITY OF SHEFFIELD   (United Kingdom)

^f Department of Clinical Neurology ^*  (United Kingdom)

^g UNIVERSITY OF LEEDS   (United Kingdom)

Author keywords

Amyotrophic lateral sclerosis (ALS); Coping; Depression; Motor neuron disease (MND); Quality of life

Indexed keywords

ADULT; AGED; ANXIETY; ARTICLE; COPING BEHAVIOR; DEPRESSION; DISTRESS SYNDROME; FATIGUE; FEMALE; FUNCTIONAL STATUS; HUMAN; MAJOR CLINICAL STUDY; MALE; MOTOR NEURON DISEASE; PRIORITY JOURNAL; PSYCHOSOCIAL WITHDRAWAL; QUALITY OF LIFE; RASCH ANALYSIS; UNITED KINGDOM;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; AGED, 80 AND OVER; CROSS-SECTIONAL STUDIES; DEPRESSION; FATIGUE; FEMALE; HUMANS; MALE; MIDDLE AGED; MOTOR NEURON DISEASE; QUALITY OF LIFE; QUESTIONNAIRES; SOCIAL ENVIRONMENT;

EID: 84887474463     PISSN: 21678421     EISSN: 21679223     Source Type: Journal    
DOI: 10.3109/21678421.2013.799700     Document Type: Article

References (42)

1. 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.
2. Goldstein L H, Atkins L, Leigh P N. C orrelates of quality of life in people with motor neuron disease (MND). Amyotrophic Lateral Scler Other Motor Neuron Disord. 2002; 3:123-9.
3. 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.
4. 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.
5. 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.
6. Matuz T, Birbaumer N, Hautzinger M, Kubler A. Coping with amyotrophic lateral sclerosis: an integrative view. J Neurol Neurosur Ps. 2010; 81:893-8.
7. Lou J S, Reeves A, Benice T, Sexton G. F atigue and depression are associated with poor quality of life in ALS. Neurology. 2003; 60:122-3.
8. 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.
9. Young J M, McNicoll P. A gainst all odds: positive life experiences of people with advanced amyotrophic lateral sclerosis. Health Soc Work. 1998; 23:35-43.
10. Hugel H, Pih N, Dougan C P, Rigby S, Young C A. I dentifying 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.
11. Rusli B N, Edimansyah B A, Naing L. W orking conditions, self-perceived stress, anxiety, depression and quality of life: a structural equation modelling approach. BMC Public Health. 2008; 8.
12. Karabatsos G. The Rasch model, additive conjoint measurement, and new models of probabilistic measurement theory. J Appl Meas. 2001; 2:389-423.
13. McLeod J E, Clarke D M. A review of psychosocial aspects of motor neuron disease. J Neurol Sci. 2007; 258:4-10.
14. Rasch G. P robabilistic models for some intelligence and attainment tests. Chicago: The University of Chicago Press; 1960.
15. Gibbons C J, Mills R J, Thornton E W, Ealing J, Mitchell J D, 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.
16. Gibbons C J, Mills R J, Thornton E W, Ealing J, Mitchell J D, 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.
17. Zigmond A S, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand. 1983; 67:361-70.
18. 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.
19. 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.
20. 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.
21. Skevington S M, Lotfy M, O 'Connell K A. The World Health Organization's WHO QoL-BREF quality of life assessment: psychometric properties and results of the international fi eld trial. A report from the WHO QoL group. Qual Life Res. 2004; 13:299-310.
22. SPSS (program). C hicago, IL: SPSS 2010.
23. Rasch Unitary Measurement Model 2020 (RUMM2020) (program). 4.1 Build 194 version. Perth, Australia: RUMM Laboratory Pty., 2000.
24. Fan X, Thompson B, Wang L. E ffects of sample size, estimation methods, and model specifi cation on structural equation modelling fi t indexes. Struct Equ Modeling. 1999; 6:56-83.
25. Jö r eskog K, Sör bom D. S tructural Equation Modeling with the SIMPLIS Command Language. Chicago, IL.: Scientifi c Software International Inc., 1993.
26. Arbuckle JL. A MOS 6.0 user's guide.Chicago: SPSS, 2005.
27. Hu L-t, Bentler PM. C utoff Criteria for Fit Indexes in Covariance Structure Analysis: Conventional Criteria Versus New Alternatives. Struct Equ Modeling. 1999; 6:1-55.
28. Schumacker RE, Lomax RG. A beginner's guide to structural equation modelling. Second edn. Hillsdale, NJ: Erlbaum; 2004.
29. Kim K H. The relation among fi t indexes, power, and sample size in structural equation modelling. Struct Equ Modeling. 2005; 12:368-90.
30. Jackson DL. R evisiting sample size and number of parameter estimates: some support for the N:q hypothesis. Struct Equ Modeling. 2003; 10:128-41.
31. Munck I ME. M odel building in comparative education: application of the LISREL method to cross-national survery data. Stockholm: Almqvist & Wissel; 1979.
32. Mathieu JE, Tannenbaum SI, Salas E. I nfl uences of individual and situational characteristics on measures of training effectivness Acad Manage J. 1992; 35:828-47.
33. Klein R B. P rinciples and practice of structural equation modeling (2nd edn). New York: Guildford Press; 2005.
34. Alonso A, Logroscino G, Jick S, Hernan M. I ncidence and lifetime risk of motor neuron disease in the United Kingdom: a population based study. Eur J Neurol. 2009; 16:745-51.
35. Gibbons C J, Thornton E W, Young C A. The lived experience of fatigue in MND: a qualitative study from the patient's perspective. Amyotroph Lateral Scler. 2010; 11:144.
36. Neudert C, Wasner M, Borasio G D. I ndividual 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.
37. 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.
38. Ledesma D, Kumano H. M indfulness based stress reduction and cancer: a meta analysis. Psycho-oncology. 2009; 18:571-9.
39. Bagozzi RP, Edwards JR. A general approach for representing constructs in organizational research. Organ Res Met. 1998; 1:45-87.
40. McFarland B H, Tolle S W, Lee M A. Attitudes of patients with amyotrophic lateral sclerosis and their caregivers toward assisted suicide. N Engl J Med. 1998; 339:967-73.
41. Plahuta J M, McCulloch B J, Kasarskis E J, Ross M A, Walter RA, McDonald ER. Amyotrophic lateral sclerosis and hopelessness: psychosocial factors. Social Sci Med. 2002; 55:2131.
42. Pagnini F, Simmons Z, Corbo M, Molinari E. Amyotrophic lateral sclerosis: time for research on psychological intervention Amyotroph Lateral Scler. 2012; 13:416-7.