Quality of life of patients with amyotrophic lateral sclerosis

Psychology, Health and Medicine

Volumn 17, Issue 5, 2012, Pages 621-628

  Tramonti, Francesco ^a   Bongioanni, Paolo ^a   Di Bernardo, Carolina ^a   Davitti, Sara ^a   Rossi, Bruno ^a  

^a UNIVERSITY HOSPITAL OF PISA   (Italy)

Author keywords

ALS; functional status; health related QoL; patient centred QoL

Indexed keywords

ADAPTIVE BEHAVIOR; ADULT; AGED; AMYOTROPHIC LATERAL SCLEROSIS; ARTICLE; DEPRESSION; FEMALE; HUMAN; MALE; MIDDLE AGED; PATHOPHYSIOLOGY; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; SATISFACTION; SEXUAL DEVELOPMENT; STATISTICAL ANALYSIS;

ADAPTATION, PSYCHOLOGICAL; ADULT; AGED; AGED, 80 AND OVER; AMYOTROPHIC LATERAL SCLEROSIS; DATA INTERPRETATION, STATISTICAL; DEPRESSION; FEMALE; HUMANS; MALE; MIDDLE AGED; PERSONAL SATISFACTION; QUALITY OF LIFE; QUESTIONNAIRES; SEX CHARACTERISTICS;

EID: 84865022073     PISSN: 13548506     EISSN: None     Source Type: Journal    
DOI: 10.1080/13548506.2011.651149     Document Type: Article

References (33)

1. Andersen, P.M., Borasio, G.D., Dengler, R., Hardiman, O., Kollewe, K., Leigh, P.N. EFNS Task Force on Diagnosis and Management of Amyotrophic Lateral Sclerosis (2005). EFNS task force on management of amyotrophic lateral sclerosis: Guidelines for diagnosing and clinical care of patients and relatives. European Journal of Neurology, 12, 921-938.
2. Averill, A.J., Kasarskis, E.J., & Segerstrom, S.C. (2007). Psychological health in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 8, 243-254.
3. Bede, P, Oliver, D., Stodart, J., Van den Berg, L., Simmons, Z., Brannaǵ in, D.O.Borasio, G.D. (2011). Palliative care in amyotrophic lateral sclerosis: A review of current international guidelines and initiatives. Journal of Neurology, Neurosurgery and Psychiatry, 82, 413-418.
4. Bromberg, M.B. (2008). Quality of life in amyotrophic lateral sclerosis. Physical Medicine and Rehabilitation Clinics of North America, 19, 591-605.
5. Bromberg, M.B., & Forshew, D.A. (2002). Comparison of instruments addressing quality of life in patients with ALS and their caregivers. Neurology, 58, 320-322.
6. Brooks, B.R., Miller, R.G., Swash, M., Munsat, T.L., & World Federation of Neurology Research Group on Motor Neuron Diseases (2000). El Escorial revisited: Revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 1, 293-299.
7. Cedarbaum, J.M., Stambler, N. (1997). Performance of the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS) in multicenter clinical trials. Journal of the Neurological Sciences, 152(S1), S1-S9.
8. Chiò , A., Gauthier, A., Calvo, A., Ghiglione, P., & Mutani, R. (2005). Caregiver burden and patients' perception of being a burden in ALS. Neurology, 64, 1780-1782.
9. Clarke, S., Hickey, A., O'Boyle, C., & Hardiman, O. (2001). Assessing individual quality of life in amyotrophic lateral sclerosis. Quality of Life Research, 10, 149-158.
10. Epton, J., Harris, R., & Jenkinson, C. (2009). Quality of life in amyotrophic lateral sclerosis/motor neuron disease: A structured review. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 10(1), 15-26.
11. Felgoise, S.H., Stewart, J.L., Bremer, B.A., Walsh, S.M., Bromberg, M.B., & Simmons, Z. (2009). The SEIQoL-DW for assessing quality of life in ALS: Strengths and limitations. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 10, 456-462.
12. Gauthier, A., Vignola, A., Calvo, A., Cavallo, E., Moglia, C., Sellitti, L.Chiò , A. (2007). A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology, 68, 923-926.
13. Goldstein, L.H., Adamson, M., Jeffrey, L., Down, K., Barby, T., Wilson, C., & Leigh, P.N. (1998). The psychological impact of MND on patients and carers. Journal of the Neurological Sciences, 160(Suppl. 1), S114-S121.
14. Goldstein, L.H., Atkins, L., Landau, S., Brown, R., & Leigh, P.N. (2006). Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: A longitudinal study. Psychological Medicine, 36, 865-875.
15. Grehl, T., Rupp, M., Budde, P., Tegenthoff, M., & Fangerau, H. (2011). Depression and QOL in patients with ALS: How do self-ratings and ratings by relatives differ? Quality of Life Research, 20, 569-574.
16. Hammer, E.M., Haecker, S., Hautzinger, M., Meyer, T.D., & Kuebler, A. (2008). Validity of the ALS-Depression-Inventory (ADI-12): A new screening instrument for depressive disorders in patients with amyotrophic lateral sclerosis. Journal of Affective Disorders, 109(1), 213-219.
17. Hecht, M.J., Graesel, E., Tigges, S., Hillemacher, T., Winterholler, M., Hilz, M.J. Neundörfer B. (2003). Burden of care in amyotrophic lateral sclerosis. Palliative Medicine, 17, 327-333.
18. Hill, M.R., Noonan, V.K., Sakakibara, B.M., Miller, W.C., & the SCIRE Research Team (2010). Quality of life instruments and definitions in individuals with spinal cord injury: A systematic review. Spinal Cord, 48, 438-450.
19. Kurt, A.,Nijboer, F.,Matuz, T.,&Kübler,A. (2007). Depression and anxiety in individualswith amyotrophic lateral sclerosis: Epidemiology and management. CNS Drugs, 21, 279-291.
20. Matuz, T., Birbaumer, N., Hautzinger, M., & Kübler, A. (2010). Coping with amyotrophic lateral sclerosis: An integrative view. Journal of Neurology, Neurosurgery and Psychiatry, 81, 893-898.
21. McGee, H. (2004). Quality of life. In A. Kaptein & J. Weinmann (Eds.), Health psychology (pp. 234-257). Oxford: Blackwell
22. McLeod, J.E., & Clarke, D.M. (2007). A review of psychosocial aspects of motor neurone disease. Journal of the Neurological Sciences, 258, 4-10.
23. Neudert, C., Wasner, M., & Borasio, G.D. (2001). Patients' assessment of quality of life instruments: A randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis. Journal of Neurological Sciences, 191(1-2), 103-109.
24. Neudert, C., Wasner, M., & Borasio, G.D. (2004). Individual quality of life is not correlated with health-related quality of life or physical function in patients with amyotrophic lateral sclerosis. Journal of Palliative Medicine, 7, 551-557.
25. Olsson Ozanne, A.G., Strang, S., & Persson, L.I. (2011). Quality of life, anxiety and depression in ALS patients and their next of kin. Journal of Clinical Nursing, 20(1-2), 283-291.
26. Rabkin, J.G., Albert, S.M., Rowland, L.P., & Mitsumoto, H. (2009). How common is depression among ALS caregivers? A longitudinal study. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 10, 448-455.
27. Rabkin, J.G., Wagner, G.J., & Del Bene, M. (2000). Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosomatic Medicine, 62, 271-279.
28. Simmons, Z. (2005). Management strategies for patients with amyotrophic lateral sclerosis from diagnosis through death. The Neurologist, 11, 257-270.
29. Trail, M., Nelson, N., Van, N.J., Appel, S.H., & Lai, E.C. (2004). Major stressors facing patients with Amyotrophic Lateral Sclerosis (ALS): A survey to identify their concerns and to compare with those of their caregivers. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 5(1), 40-45.
30. Trail, M., Nelson, N.D., Van, J.N., Appel, S.H., & Lai, E.C. (2003). A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. Journal of the Neurological Sciences, 209(1-2), 79-85.
31. Ware, J.E., & Sherbourne, C.D. (1992). The MOS 36-item short-form health survey (SF-36). Conceptual framework and item selection. Medical Care, 30, 473-483.
32. Wettergren, L., Kettis-Lindblad, A., Sprangers, M., & Ring, L. (2009). The use, feasibility and psychometric properties of an individualised quality-of-life instrument: A systematic review of the SEIQoL-DW. Quality of Life Research, 18, 737-746.
33. Zung, W.W. (1965). A self-rating depression scale. Archives of General Psychiatry, 12, 63-70.