Abstract
Quality of life (QOL) is an important issue in patients with amyotrophic lateral sclerosis (ALS). QOL measurements can help the support care team understand how to maintain or improve QOL in ALS patients. The purpose of this study was to describe the relationship between health-related QOL, disease severity and social support in ALS patients. In the current study, 49 German ALS patients were evaluated using the European quality of life score (EQ-5D), ALS Functional Rating Scale in its revised form (ALSFRS-R), Social Support Questionnaire (F-SozU K-14) and the Beck depression inventory. Data concerning patient history and socioeconomic background were collected using a semi-structured interview. Age, gender, number of children, habitation, socioeconomic status and disease duration were not significantly related to health-related QOL (EQ-5D). Positive correlations were found between the ALSFRS-R, social support and health-related QOL, whereas depression was negatively correlated with the ALSFRS-R score. A multiple linear regression model indicated a significant influence of the ALSFRS-R score on health-related QOL in ALS patients, with an additional trend for social support as a predictor. These results suggest that because of the logarithmic association between measures, compensatory therapy for loss of health-related QOL should be optimised during the course of the disease in ALS patients.
Similar content being viewed by others
References
Averill, A. J., Kasarskis, E. J., & Segerstrom, S. C. (2007). Psychological health in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 8(4), 243–254.
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.
Chio, A., Gauthier, A., Montuschi, A., Calvo, A., Di Vito, N., Ghiglione, P., et al. (2004). A cross sectional study on determinants of quality of life in ALS. Journal of Neurology, Neurosurgery and Psychiatry, 75(11), 1597–1601.
Clarke, S., Hickey, A., O’Boyle, C., & Hardiman, O. (2001). Assessing individual quality of life in amyotrophic lateral sclerosis. Quality of Life Research, 10(2), 149–158.
Cupp, J., Simmons, Z., Berg, A., Felgoise, S. H., Walsh, S. M., & Stephens, H. E. (2011). Psychological health in patients with ALS is maintained as physical function declines. Amyotrophic Lateral Sclerosis, 12(4), 290–296.
De Groot, I. J., Post, M. W., van Heuveln, T., van den Berg, L. H., & Lindeman, E. (2007). Cross-sectional and longitudinal correlations between disease progression and different health-related quality of life domains in persons with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 8(6), 356–361.
Donyavi, T., Naieni, K. H., Nedjat, S., Vahdaninia, M., Najafi, M., & Montazeri, A. (2011). Socioeconomic status and mortality after acute myocardial infarction: A study from Iran. International Journal for Equity in Health, 10(1), 9.
Dupuis, L., Dengler, R., Heneka, M. T., Meyer, T., Zierz, S., Kassubek, J., et al. (2012). A randomized, double blind, placebo-controlled trial of pioglitazone in combination with riluzole in amyotrophic lateral sclerosis. PLoS One, 7(6), e37885.
Epton, J., Harris, R., & Jenkinson, C. (2009). Quality of life in amyotrophic lateral sclerosis/motor neuron disease: A structured review. Amyotrophic Lateral Sclerosis, 10(1), 15–26.
Fegg, M. J., Kogler, M., Brandstatter, M., Jox, R., Anneser, J., Haarmann-Doetkotte, S., et al. (2010). Meaning in life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 11(5), 469–474.
Fydrich, T., Sommer, G., Tydecks, S., & Brähler, E. (2009). Fragebogen zur sozialen Unterstützung (F-SozU): Normierung der Kurzform (K-14) Social Support Questionnaire (F-SozU): Standardization of short form (K-14). Zeitschrift für Medizinische Psychologie, 18(1), 43–48.
Ganzini, L., Johnston, W. S., & Hoffman, W. F. (1999). Correlates of suffering in amyotrophic lateral sclerosis. Neurology, 52(7), 1434–1440.
Gignac, M. A., Cao, X., Mcalpine, J., & Badley, E. M. (2011). Measures of disability: Arthritis Impact Measurement Scales 2 (AIMS2), Arthritis Impact Measurement Scales 2-Short Form (AIMS2-SF), The Organization for Economic Cooperation and Development (OECD) Long-Term Disability (LTD) Questionnaire, EQ-5D, World Health Organization Disability Assessment Schedule II (WHODASII), Late-Life Function and Disability Instrument (LLFDI), and Late-Life Function and Disability Instrument-Abbreviated Version (LLFDI-Abbreviated). American College of Rheumatology, 63(Suppl 11), S308–S324.
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.
Green, C., Kiebert, G., Murphy, C., Mitchell, J. D., O’Brien, M., Burrell, A., et al. (2003). Patients’ health-related quality-of-life and health state values for motor neurone disease/amyotrophic lateral sclerosis. Quality of Life Research, 12(5), 565–574.
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(4), 569–574.
Hecht, M., Hillemacher, T., Grasel, E., Tigges, S., Winterholler, M., Heuss, D., et al. (2002). Subjective experience and coping in ALS. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 3(4), 225–231.
Hjermstad, M. J., Fayers, P. M., Bjordal, K., & Kaasa, S. (1998). Using reference data on quality of life: The importance of adjusting for age and gender, exemplified by the EORTC QLQ-C30 (+3). European Journal of Cancer, 34(9), 1381–1389.
Hogg, K. E., Goldstein, L. H., & Leigh, P. N. (1994). The psychological impact of motor neurone disease. Psychological Medicine, 24(3), 625–632.
Hunter, M. D., Robinson, I. C., & Neilson, S. (1993). The functional and psychological status of patients with amyotrophic lateral sclerosis: Some implications for rehabilitation. Disability and Rehabilitation, 15(3), 119–126.
Jelsone-Swain, L., Persad, C., Votruba, K. L., Weisenbach, S. L., Johnson, T., Gruis, K. L., et al. (2012). The relationship between depressive symptoms, disease state, and cognition in amyotrophic lateral sclerosis. Frontiers in Psychology, 3, 542.
Jenkinson, C., Fitzpatrick, R., Swash, M., & Peto, V. (2000). The ALS health profile study: Quality of life of amyotrophic lateral sclerosis patients and carers in Europe. Journal of Neurology, 247(11), 835–840.
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.
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.
Konig, H. H., Bernert, S., & Angermeyer, M. C. (2005). Health Status of the German population: results of a representative survey using the EuroQol questionnaire. Gesundheitswesen, 67(3), 173–182.
Logroscino, G., Traynor, B. J., Hardiman, O., Chio’, A., Couratier, P., Mitchell, J. D., et al. (2008). Descriptive epidemiology of amyotrophic lateral sclerosis: New evidence and unsolved issues. Journal of Neurology, Neurosurgery and Psychiatry, 79(1), 6–11.
Lule, D., Pauli, S., Altintas, E., Singer, U., Merk, T., Uttner, I., et al. (2012). Emotional adjustment in amyotrophic lateral sclerosis (ALS). Journal of Neurology, 259(2), 334–341.
Mahoney, F. I., & Barthel, D. W. (1965). Functional evaluation: The barthel index. Maryland State Medical Journal, 14, 61–65.
Matuz, T., Birbaumer, N., Hautzinger, M., & Kubler, A. (2010). Coping with amyotrophic lateral sclerosis: An integrative view. Journal of Neurology, Neurosurgery and Psychiatry, 81(8), 893–898.
McDonald, E. R., Hillel, A., & Wiedenfeld, S. A. (1996). Evaluation of the psychological status of ventilatory-supported patients with ALS/MND. Palliative Medicine, 10(1), 35–41.
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.
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(4), 551–557.
Nygren, I., & Askmark, H. (2006). Self-reported quality of life in amyotrophic lateral sclerosis. Journal of Palliative Medicine, 9(2), 304–308.
Olsson Ozanne AG, 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.
Peric’, S., Rakocevic-Stojanovic, V., Stevic, Z., Basta, I., Pavlovic, S., Vujanac, V., et al. (2010). Health-related quality of life in patients with myotonic dystrophy type 1 and amyotrophic lateral sclerosis. Acta Neurologica Belgica, 110(1), 71–77.
Rabkin, J. G., Wagner, G. J., & Del Bene, M. (2000). Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosomatic Medicine, 62(2), 271–279.
Robbins, R. A., Simmons, Z., Bremer, B. A., Walsh, S. M., & Fischer, S. (2001). Quality of life in ALS is maintained as physical function declines. Neurology, 56(4), 442–444.
Rothwell, P. M., McDowell, Z., Wong, C. K., & Dorman, P. J. (1997). Doctors and patients don’t agree: Cross sectional study of patients’ and doctors’ perceptions and assessments of disability in multiple sclerosis. BMJ, 314(7094), 1580–1583.
Sangha, H., Lipson, D., Foley, N., Salter, K., Bhogal, S., Pohani, G., et al. (2005). A comparison of the barthel index and the functional independence measure as outcome measures in stroke rehabilitation: Patterns of disability scale usage in clinical trials. International Journal of Rehabilitation Research, 28(2), 135–139.
Simmons, Z., 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(3), 388–392.
Taylor, L., Wicks, P., Leigh, P. N., & Goldstein, L. H. (2010). Prevalence of depression in amyotrophic lateral sclerosis and other motor disorders. European Journal of Neurology, 17(8), 1047–1053.
Tedman, B. M., Young, C. A., & Williams, I. R. (1997). Assessment of depression in patients with motor neuron disease and other neurologically disabling illness. Journal of the Neurological Sciences, 152(Suppl 1), S75–S79.
Tramonti, F., Bongioanni, P., Fanciullacci, C., & Rossi, B. (2012). Balancing between autonomy and support: Coping strategies by patients with amyotrophic lateral sclerosis. Journal of the Neurological Sciences, 320(1–2), 106–109.
Van den Berg, J. P., Kalmijn, S., Lindeman, E., Veldink, J. H., de Visser, M., van der Graaff, M. M., et al. (2005). Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology, 65(8), 1264–1267.
Wilson, I. B. (1999). Clinical understanding and clinical implications of response shift. Social Science and Medicine, 48(11), 1577–1588.
Winter, Y., Schepelmann, K., Spottke, A. E., Claus, D., Grothe, C., Schroder, R., et al. (2010). Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy. Journal of Neurology, 257(9), 1473–1481.
Author information
Authors and Affiliations
Corresponding author
Additional information
Benjamin Ilse and Tino Prell have contributed equally to this work.
Rights and permissions
About this article
Cite this article
Ilse, B., Prell, T., Walther, M. et al. Relationships Between Disease Severity, Social Support and Health-Related Quality of Life in Patients with Amyotrophic Lateral Sclerosis. Soc Indic Res 120, 871–882 (2015). https://doi.org/10.1007/s11205-014-0621-y
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11205-014-0621-y