Quality of Life Research

, Volume 20, Issue 4, pp 569–574 | Cite as

Depression and QOL in patients with ALS: how do self-ratings and ratings by relatives differ?

  • Torsten Grehl
  • Mirjam Rupp
  • Paula Budde
  • Martin Tegenthoff
  • Heiner Fangerau



Amyotrophic lateral sclerosis (ALS) is a lethal neurodegenerative disease affecting the motor nervous system and currently lacking effective means of treatment. The focus of ALS treatment therefore lies in palliative treatment from a multidisciplinary team. Published findings regarding affective components and patients’ perceived quality-of-life (QoL) as well as comparative reports of family members/caregivers remain equivocal.


In this study, 41 ALS patients and their relatives were enrolled in a study employing the 12-item ALS-Depression-Inventory (ADI-12) and the Munich quality-of-life dimensions list (MLDL). The ALS-functional rating scale (ALSFRS-R) was used to evaluate physical disabilities.


The ADI-12 depression scale data identified nine patients with depressive disorders; the patients had satisfactory QoL outcomes on the MLDL. The results did not differ significantly between ALS patients and their relatives.


Thus, in agreement with other studies, QoL and emerging depression do not automatically coincide with patients’ physical impairments of the patients. This “well-being paradox” is currently not well understood, and further studies are needed to optimize the treatment of patients through the course of disease progression.


Quality-of-life Amyotrophic lateral sclerosis Well-being paradox 


  1. 1.
    Sprangers, M. A., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science and Medicine, 48(11), 1507–1515.PubMedCrossRefGoogle Scholar
  2. 2.
    Yoshida, S., Mulder, D. W., Kurland, L. T., Chu, C. P., & Okazaki, H. (1986). Follow-up study on amyotrophic lateral sclerosis in Rochester, Minn., 1925 through 1984. Neuroepidemiology, 5(2), 61–70.PubMedCrossRefGoogle Scholar
  3. 3.
    Kondo, K. (1995). Epidemiology of motor neuron disease. In P. N. Leigh & M. Swash (Eds.), Motor Neuron Disease Biology and Management (pp. 19–33). London: Springer Verlag.Google Scholar
  4. 4.
    Kristjanson, L. J., Toye, C., & Dawson, S. (2003). New dimensions in palliative care: A palliative approach to neurodegenerative diseases and final illness in older people. Medical Journal of Australia, 179(6 Suppl), S41–S43.PubMedGoogle Scholar
  5. 5.
    Kübler, A., Winter, S., Kaiser, J., Birbaumer, N., & Hautzinger, M. (2005). Das ALS-Depressionsinventar (ADI): Ein Fragebogen zur Messung von Depression bei degenerativen neurologischen Erkrankungen (Amyotrophe Lateralsklerose). Zeitschrift für Klinische Psychologie und Psychotherapie, 34(1), 19–26.CrossRefGoogle Scholar
  6. 6.
    Rabkin, J. G., Albert, S. M., Del Bene, M. L., O’Sullivan, I., Tider, T., Rowland, L. P., et al. (2005). Prevalence of depressive disorders and change over time in late-stage ALS. Neurology, 65(1), 62–67.PubMedCrossRefGoogle Scholar
  7. 7.
    Trail, M., Nelson, N., 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, 79–85.PubMedCrossRefGoogle Scholar
  8. 8.
    Kurt, A., Nijboer, F., Matuz, T., & Kübler, A. (2007). Depression and anxiety in individuals with amyotrophic lateral sclerosis. CNS Drugs, 21(4), 270–291.CrossRefGoogle Scholar
  9. 9.
    Gauthier, A., Vignola, A., Calvo, A., Cavallo, E., Moglia, C., Sellitti, L., et al. (2007). A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology, 68(12), 923–926.PubMedCrossRefGoogle Scholar
  10. 10.
    Lule, D., Häcker, S., Ludolph, A. C., Bierbaumer, N., & Kübler, A. (2008). Depression und Lebensqualität bei Patienten mit amyotropher Lateralsklerose. Deutsches Ärzteblatt, 105(23), 397–403.Google Scholar
  11. 11.
    Kaub-Wittemer, D., Steinbuchel, N., Wasner, M., Laier-Groeneveld, G., & Borasio, G. D. (2003). Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. Journal of Pain and Symptom Management, 26(4), 890–896.PubMedCrossRefGoogle Scholar
  12. 12.
    Lo Coco, G., Lo Coco, D., Cicero, V., Oliveri, A., Lo Verso, G., Piccoli, F., et al. (2005). Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers. Journal of the Neurological Sciences, 238(1–2), 11–17.PubMedCrossRefGoogle Scholar
  13. 13.
    Goldstein, L. H., Atkins, L., & Leigh, P. N. (2002). Correlates of quality of life in people with motor neuron disease (MND). Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 3(3), 123–129.PubMedCrossRefGoogle Scholar
  14. 14.
    Robbins, R. A., Simmons, Z., Bremer, B. A., Walsh, S. M., & Fischer, S. (2001). Quality of life in ALS is maintained as physical function decline. Neurology, 56, 442–444.PubMedGoogle Scholar
  15. 15.
    Chio, A., Gauthier, A., Calvo, A., Ghiglione, P., & Mutani, R. (2005). Caregiver burden and patients’ perception of being a burden in ALS. Neurology, 64(10), 1780–1782.PubMedCrossRefGoogle Scholar
  16. 16.
    Ganzini, L., Johnston, W. S., & Hoffman, W. F. (1999). Correlates of suffering in amyotrophic lateral sclerosis. Neurology, 52(7), 1434–1440.PubMedGoogle Scholar
  17. 17.
    Kübler, A., Winter, S., Ludolph, A. C., Hautzinger, M., & Bierbaumer, N. (2005). Severity of depressive symptoms and quality of life in patients with amyotrophic lateral sclerosis. Neurorehabilitation Neural Repair, 19, 182–193.PubMedCrossRefGoogle Scholar
  18. 18.
    Adelman, E. E., Albert, S. M., Rabkin, J. G., Del Bene, M. L., Tider, T., & O’Sullivan, I. (2004). Disparities in perceptions of distress and burden in ALS patients and family caregivers. Neurology, 62(10), 1766–1770.PubMedGoogle Scholar
  19. 19.
    Brooks, B. R. (1994). El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. Subcommittee on Motor Neuron Diseases/Amyotrophic Lateral Sclerosis of the World Federation of Neurology Research Group on Neuromuscular Diseases and the El Escorial ‘Clinical limits of amyotrophic lateral sclerosis’ workshop contributors. Journal of the Neurological Sciences, 124(Suppl), 96–107.Google Scholar
  20. 20.
    Cedarbaum, J. M., Stambler, N., Malta, E., Fuller, C., Hilt, D., Thurmond, B., et al. (1999). The ALSFRS-R: A revised ALS functional rating scale that incorporates assessments of respiratory function. BDNF ALS Study Group (Phase III). Journal of the Neurological Sciences, 169(1–2), 13–21.PubMedCrossRefGoogle Scholar
  21. 21.
    Von Steinbüchel, N., Bullinger, M., & Kirchberger, I. (1999). Die Münchner Lebensqualitäts-Dimensionen Liste (MLDL): Entwicklung und Prüfung eines Verfahrens zur krankheitsübergreifenden Erfassung von Lebensqualität. Zeitschrift für medizinische Psychologie, 3, 99–112.Google Scholar
  22. 22.
    Hautzinger, M. (1998). Depression. Göttingen: Hogrefe.Google Scholar
  23. 23.
    Ho, A. (2008). Relational autonomy or undue pressure? Family’s role in medical decision-making. Scandinavian Journal of Caring Sciences, 22(1), 128–135.PubMedCrossRefGoogle Scholar
  24. 24.
    Kim, S. Y., Kim, H. M., Langa, K. M., Karlawish, J. H., Knopman, D. S., & Appelbaum, P. S. (2009). Surrogate consent for dementia research: A national survey of older Americans. Neurology, 72(2), 149–155.PubMedCrossRefGoogle Scholar
  25. 25.
    Ruhnke, G. W., Wilson, S. R., Akamatsu, T., Kinoue, T., Takashima, Y., Goldstein, M. K., et al. (2000). Ethical decision making and patient autonomy: A comparison of physicians and patients in Japan and the United States. Chest, 118(4), 1172–1182.PubMedCrossRefGoogle Scholar
  26. 26.
    McLeod, J. E., & Clarke, D. M. (2007). A review of psychosocial aspects of motor neurone disease. Journal of the Neurological Sciences, 258(1–2), 4–10.PubMedCrossRefGoogle Scholar
  27. 27.
    Wicks, P., Abrahams, S., Masi, D., Hejda-Forde, S., Leigh, P. N., & Goldstein, L. H. (2007). Prevalence of depression in a 12-month consecutive sample of patients with ALS. European Journal of Neurology, 14(9), 993–1001.PubMedCrossRefGoogle Scholar
  28. 28.
    Kiebert, G. M., Green, C., Murphy, C., Mitchell, J. D., O’Brien, M., Burrell, A., et al. (2001). Patients’ health-related quality of life and utilities associated with different stages of amyotrophic lateral sclerosis. Journal of the Neurological Sciences, 191(1–2), 87–93.PubMedCrossRefGoogle Scholar
  29. 29.
    Herschbach, P. (2002). The “Well-being paradox” in quality-of-life research. Psychotherapie, Psychosomatik, Medizinische Psychologie, 52(3–4), 141–150.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2010

Authors and Affiliations

  • Torsten Grehl
    • 1
  • Mirjam Rupp
    • 1
  • Paula Budde
    • 1
  • Martin Tegenthoff
    • 1
  • Heiner Fangerau
    • 2
  1. 1.Department of NeurologyRuhr-University BochumBochumGermany
  2. 2.Institute of the History, Philosophy and Ethics of MedicineUlm UniversityUlmGermany

Personalised recommendations