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Quality of Life Research

Gepubliceerd in:

01-05-2011

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

Auteurs: Torsten Grehl, Mirjam Rupp, Paula Budde, Martin Tegenthoff, Heiner Fangerau

Gepubliceerd in: Quality of Life Research | Uitgave 4/2011

Abstract

Background

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.

Methods

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.

Results

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.

Conclusions

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.

vorige artikel Patient-rated health status predicts prognosis following percutaneous coronary intervention with drug-eluting stenting

volgende artikel Risk of malnutrition and health-related quality of life in community-living elderly men and women: The Tromsø study

For individual questionnaires different numbers of test subjects exist. This is due to the fact that individual patients were unable to complete all questionnaires or could not answer single items.

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.PubMedCrossRef

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.PubMedCrossRef

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.

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.PubMed

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.CrossRef

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.PubMedCrossRef

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.PubMedCrossRef

Kurt, A., Nijboer, F., Matuz, T., & Kübler, A. (2007). Depression and anxiety in individuals with amyotrophic lateral sclerosis. CNS Drugs, 21(4), 270–291.CrossRef

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.PubMedCrossRef

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.

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMed

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.PubMedCrossRef

16.

Ganzini, L., Johnston, W. S., & Hoffman, W. F. (1999). Correlates of suffering in amyotrophic lateral sclerosis. Neurology, 52(7), 1434–1440.PubMed

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.PubMedCrossRef

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.PubMed

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.

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.PubMedCrossRef

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.

22.

Hautzinger, M. (1998). Depression. Göttingen: Hogrefe.

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

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.PubMedCrossRef

29.

Herschbach, P. (2002). The “Well-being paradox” in quality-of-life research. Psychotherapie, Psychosomatik, Medizinische Psychologie, 52(3–4), 141–150.PubMedCrossRef

Titel: Depression and QOL in patients with ALS: how do self-ratings and ratings by relatives differ?
Auteurs: Torsten Grehl
Mirjam Rupp
Paula Budde
Martin Tegenthoff
Heiner Fangerau
Publicatiedatum: 01-05-2011
Uitgeverij: Springer Netherlands
Gepubliceerd in: Quality of Life Research / Uitgave 4/2011
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-010-9781-7

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Abstract

Background

Methods

Results

Conclusions

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