A Comparison of Mood and Quality of Life Among People with Progressive Neurological Illnesses and Their Caregivers

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Abstract

The current study was designed to investigate differences in mood and a range of QOL domains among 423 patients and 335 caregivers of people with motor neurone disease (MND), Huntington’s disease (HD), Parkinson’s, and multiple sclerosis (MS). Patients and caregivers completed an anonymous questionnaire that evaluated their mood (anxiety, depression, fatigue, confusion) and QOL (physical, psychological, social, environment). The results demonstrated that caregivers of people with MND and HD experienced most problems with their mood and QOL compared to caregivers of people in the other illness groups. There were few differences in mood or QOL between patients and caregivers. Patients generally showed greater confusion, physical impairment, and psychological maladjustment. The findings suggest that educational and intervention programs need to be developed to help both patients and their caregivers to adjust and cope with these illnesses, particularly caregivers of people with MND and HD.

Keywords

Caregivers Huntington’s disease Mood Motor neurone disease Multiple sclerosis Parkinson’s Patients Quality of life 
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Notes

Acknowledgements

The authors would like to thank the Motor Neurone Disease Association of Victoria, Australian Huntington’s Disease Association of Victoria, Multiple Sclerosis Australia and Parkinson’s Victoria for their support in this research. We also thank the Australian Research Council for funding the study.

References

  1. Aronson, K. J. (1997). Quality of life among persons with multiple sclerosis and their caregivers. Neurology, 48, 74–80.PubMedGoogle Scholar
  2. Aubeeluck, A. (2005). Caring for the carers: Quality of life in Huntington’s disease. British Journal of Nursing, 14, 452–454.PubMedGoogle Scholar
  3. Behari, M., Srivastava, A. K., & Pandey, R. M. (2005). Quality of life in patients with Parkinson’s disease. Parkinsonism and Related Disorders, 11, 221–226. doi: 10.1016/j.parkreldis.2004.12.005.CrossRefGoogle Scholar
  4. Burnfield, A. (2004). Need to know multiple sclerosis. Oxford: Harcourt Education.Google Scholar
  5. Carter, J. H., Stewart, B. J., Archbold, P. G., Inoue, I., Jaglin, J., Lannon, M., et al. (1998). Living with a person who has Parkinson’s disease: The spouse’s perspective by stage of disease. Movement Disorders, 13, 20–28. doi: 10.1002/mds.870130108.PubMedCrossRefGoogle Scholar
  6. Cummings, J. L. (1995). Behavioral and psychiatric symptoms associated with Huntington’s disease. Advances in Neurology, 65, 179–186.PubMedGoogle Scholar
  7. Curran, S. L., Andrykowski, M. A., & Studts, J. L. (1995). Short form of the Profile of Mood States (POMS-SF): Psychometric information. Psychological Assessment, 7, 80–83. doi: 10.1037/1040-3590.7.1.80.CrossRefGoogle Scholar
  8. do Prado, R. C. P., & Barbosa, E. R. (2005). Depression in Parkinson’s disease: Study of 60 cases. Arquivos de Neuro-Psiquiatria, 63, 766–771.Google Scholar
  9. Fernandez, H. H., Tabamo, R. E., David, R. R., & Friedman, J. H. (2001). Predictors of depressive symptoms among spouse caregivers in Parkinson’s disease. Movement Disorders, 16, 1123–1125. doi: 10.1002/mds.1196.PubMedCrossRefGoogle Scholar
  10. Glaetzer, K. (1998). Motor neurone disease: A learning package for professionals. (1st ed.). Palliative Profile, 6, 5.Google Scholar
  11. Goldsmith, C. (2001). Neurological disorders. The amazing brain. Woodbridge, CT, USA: Blackbirch Press, Inc.Google Scholar
  12. Helder, D. I., Kaptein, A. A., van Kempen, G. M., van Houwelingen, J. C., & Roos, R. A. (2001). Impact of Huntington’s disease on quality of life. Movement Disorders, 16, 325–330. doi: 10.1002/mds.1056.PubMedCrossRefGoogle Scholar
  13. Helder, D. I., Kaptein, A. A., van Kempen, G. M., Weinman, J., van Houwelingen, J. C., & Roos, R. A. (2002). Living with Huntington’s disease: Illness perceptions, coping mechanisms, and spouses’ quality of life. International Journal of Behavioral Medicine, 9, 37–52. doi: 10.1207/S15327558IJBM0901_03.PubMedCrossRefGoogle Scholar
  14. Kaptein, A. A., Scharloo, M., Helder, D. L., Snoei, I., van Kempen, G. M., Weinman, J., et al. (2007). Quality of life in couples living with Huntington’s disease: The role of patients’ and partners’ illness perceptions. Quality of Life Research, 116, 793–801. doi: 10.1007/s11136-007-9194-4.CrossRefGoogle Scholar
  15. Kaub-Wittemer, D., Steinbűchel, 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, 890–897. doi: 10.1016/S0885-3924(03)00323-3.PubMedCrossRefGoogle Scholar
  16. Kubler, A., Winter, S., Ludolph, A. C., Hautzinger, M., & Birbaumer, N. (2005). Severity of depressive symptoms and quality of life in patients with amyotrophic lateral sclerosis. Neurorehabilitation and Neural Repair, 19, 182–193. doi: 10.1177/1545968305276583.PubMedCrossRefGoogle Scholar
  17. McCabe, M. P. (2005). Mood and self-esteem of persons with multiple sclerosis following an exacerbation. Journal of Psychosomatic Research, 59, 161–166. doi: 10.1016/j.jpsychores.2005.04.010.PubMedCrossRefGoogle Scholar
  18. McCabe, M. P., Firth, L., & O’Connor, E. (2009). Mood and quality of life among people with progressive neurological illness. International Journal of Clinical and Health Psychology, 9, 21–35.Google Scholar
  19. McCabe, M. P., & McKern, S. (2002). Quality of life and multiple sclerosis: Comparison between people with multiple sclerosis and people from the general population. Journal of Clinical Psychology in Medical Settings, 9, 287–295. doi: 10.1023/A:1020734901150.CrossRefGoogle Scholar
  20. McCabe, M. P., McKern, S., & McDonald, E. (2004). Coping and psychological adjustment among people with multiple sclerosis. Journal of Psychosomatic Research, 56, 35–361. doi: 10.1016/S0022-3999(03)00042-4.CrossRefGoogle Scholar
  21. McNair, D. M., Lorr, M., & Droppleman, L. F. (1992). Profile of Mood States manual. San Diego, California: Educational and Industrial Testing Service.Google Scholar
  22. Menza, M., & Dobkin, R. D. (2005). Anxiety and Parkinson’s disease. Primary Psychiatry, 12, 63–68.Google Scholar
  23. O’Reilly, F., Finnan, F., Allwright, S., Smith, G. D., & Ben-Shlomo, Y. (1996). The effects of caring for a spouse with Parkinson’s disease on social, psychological and physical well-being. British Journal of General Practice, 46, 507–512.PubMedGoogle Scholar
  24. Oxtoby, M., Williams, A., & Iansek, R. (2002). Parkinson’s at your fingertips (2nd ed.). Adelaide: Flinders University.Google Scholar
  25. Pakenham, K. I., Bursnall, S., Chiu, J., Cannon, T., & Okochi, M. (2006). The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and noncaregivers. Rehabilitation Psychology, 51, 113–126. doi: 10.1037/0090-5550.51.2.113.CrossRefGoogle Scholar
  26. Patten, S. B., Jacobs, P., Petcu, R., Reimer, M. A., & Metz, L. M. (2002). Major depressive disorder and health care costs in multiples sclerosis. International Journal of Psychiatry in Medicine, 32, 167–178. doi: 10.2190/K05D-XER3-WT4Y-FDQV.PubMedCrossRefGoogle Scholar
  27. Quarrell, O. (2004). Huntington’s disease: The facts. New York, NY, USA: Oxford University Press.Google Scholar
  28. 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.PubMedGoogle Scholar
  29. Radunović, A., Mitsumoto, H., & Leigh, P. (2007). Clinical care of patients with amyotrophic lateral sclerosis. Lancet Neurology, 6, 913–925. doi: 10.1016/S1474-4422(07)70244-2.PubMedCrossRefGoogle Scholar
  30. Robinson, I., & Hunter, M. (1998). Motor Neurone Disease: The experience of illness series. New York, NY, USA: Routledge.Google Scholar
  31. Samii, A., Nutt, J. G., & Ransom, B. R. (2004). Parkinson’s disease. Lancet, 363, 1783–1793. doi: 10.1016/S0140-6736(04)16305-8.PubMedCrossRefGoogle Scholar
  32. Simmonds, S., Bremer, B. A., Robbins, R. A., Walsh, S. M., & Fischer, S. (2000). Quality of life in ALS depends on factors other than strength and physical function. Neurology, 55, 388–392.Google Scholar
  33. Tamparo, C. D., & Lewis, M. A. (2005). Diseases of the human body (4th ed.). Philadelphia: FA Davis Company.Google Scholar
  34. 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, 79–86. doi: 10.1016/S0022-510X(03)00003-0.PubMedCrossRefGoogle Scholar
  35. Trail, M., Nelson, N. D., Van, J. N., 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, 1, 40–45. doi: 10.1080/14660820310016075.CrossRefGoogle Scholar
  36. WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment. Psychological Medicine, 28, 551–558. doi: 10.1017/S0033291798006667.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2009

Authors and Affiliations

  • Marita P. McCabe
    • 1
  • Lucy Firth
    • 2
  • Elodie O’Connor
    • 1
  1. 1.School of PsychologyDeakin UniversityMelbourneAustralia
  2. 2.University of MelbourneMelbourneAustralia

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