Skip to main content
SpringerLink
Log in

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

  • Published:
Journal of Clinical Psychology in Medical Settings Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Aronson, K. J. (1997). Quality of life among persons with multiple sclerosis and their caregivers. Neurology, 48, 74–80.

    PubMed  Google Scholar 

  • Aubeeluck, A. (2005). Caring for the carers: Quality of life in Huntington’s disease. British Journal of Nursing, 14, 452–454.

    PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Burnfield, A. (2004). Need to know multiple sclerosis. Oxford: Harcourt Education.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Cummings, J. L. (1995). Behavioral and psychiatric symptoms associated with Huntington’s disease. Advances in Neurology, 65, 179–186.

    PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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 

  • 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.

    Article  PubMed  Google Scholar 

  • Glaetzer, K. (1998). Motor neurone disease: A learning package for professionals. (1st ed.). Palliative Profile, 6, 5.

    Google Scholar 

  • Goldsmith, C. (2001). Neurological disorders. The amazing brain. Woodbridge, CT, USA: Blackbirch Press, Inc.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • McNair, D. M., Lorr, M., & Droppleman, L. F. (1992). Profile of Mood States manual. San Diego, California: Educational and Industrial Testing Service.

    Google Scholar 

  • Menza, M., & Dobkin, R. D. (2005). Anxiety and Parkinson’s disease. Primary Psychiatry, 12, 63–68.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • Oxtoby, M., Williams, A., & Iansek, R. (2002). Parkinson’s at your fingertips (2nd ed.). Adelaide: Flinders University.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Quarrell, O. (2004). Huntington’s disease: The facts. New York, NY, USA: Oxford University Press.

    Google Scholar 

  • 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.

    PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Robinson, I., & Hunter, M. (1998). Motor Neurone Disease: The experience of illness series. New York, NY, USA: Routledge.

    Google Scholar 

  • Samii, A., Nutt, J. G., & Ransom, B. R. (2004). Parkinson’s disease. Lancet, 363, 1783–1793. doi:10.1016/S0140-6736(04)16305-8.

    Article  PubMed  Google Scholar 

  • 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 

  • Tamparo, C. D., & Lewis, M. A. (2005). Diseases of the human body (4th ed.). Philadelphia: FA Davis Company.

    Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • 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.

    Article  Google Scholar 

  • WHOQOL Group. (1998). Development of the World Health Organization WHOQOL-BREF Quality of Life Assessment. Psychological Medicine, 28, 551–558. doi:10.1017/S0033291798006667.

    Article  Google Scholar 

Download references

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.

Author information

Authors and Affiliations

  1. School of Psychology, Deakin University, 221 Burwood Highway, Burwood, Melbourne, VIC, 3125, Australia

    Marita P. McCabe & Elodie O’Connor

  2. University of Melbourne, Melbourne, Australia

    Lucy Firth

Authors
  1. Marita P. McCabe
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Lucy Firth
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Elodie O’Connor
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Marita P. McCabe.

Rights and permissions

Reprints and permissions

About this article

Cite this article

McCabe, M.P., Firth, L. & O’Connor, E. A Comparison of Mood and Quality of Life Among People with Progressive Neurological Illnesses and Their Caregivers. J Clin Psychol Med Settings 16, 355–362 (2009). https://doi.org/10.1007/s10880-009-9168-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10880-009-9168-5

Keywords

Search

Navigation