The Korean Journal of Rehabilitation Nursing (재활간호학회지)

Korean Academic Society of Rehabilitation Nursing (한국재활간호학회)
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Quality of Life in Patients with Amyotrophic Lateral Sclerosis

근위축성 측삭경화증 환자의 삶의 질

  • Heo, Hyun Sook (College of Nursing, Seoul National University) ;
  • Choi-Kwon, Smi (College of Nursing, Seoul National University, Research Institute of Nursing Science)
  • 허현숙 (서울대학교 간호대학) ;
  • 최스미 (서울대학교 간호대학.간호과학연구소)
  • Received : 2013.10.17
  • Accepted : 2013.12.12
  • Published : 2013.12.31
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Abstract

Purpose: This study measured the quality of life in patients with amyotrophic lateral sclerosis (ALS). Methods: The participants consisted of consecutive patients with ALS who visited the neurology outpatient department from January to July, 2008. To collect the data, face-to-face interviews were applied at S national university hospital in Seoul. Using multivariate analysis, factors to predict QOL in ALS patients including demographic factors, functional independence, depression, anxiety, social support and quality of life were analyzed. Results: The final analysis included 69 patients. The mean score for the physical health and mental health components was $34.4{\pm}21.3$ and $44.7{\pm}20.6$, respectively. The mean score for the ALS functional rating scale was $24.3{\pm}10.8$ out of 40. Anxious and depressed patients accounted for 44.9% and 71%, respectively. Quality of life in ALS patients was significantly affected by functional independence, depression and anxiety level. Conclusion: To improve the quality of life in ALS patients with declining functional independence, comprehensive interventions are necessary to manage depression and anxiety.

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References

  1. ALS CNTF Treatment Study. (ACTS) phase I-II Study Group. (1996). The amyotrophic lateral sclerosis functional rating scale: Assessment of activities of daily living in patients with amyotrophic lateral sclerosis. Archives of Neurology, 53 (2), 141-147. http://dx.doi.org/10.1001/archneur.1996.00550020045014
  2. Bourke, S. C., McColl, E., Shaw, P. J., & Gibson, G. J. (2004). Validation of quality of life instruments in ALS. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 5, 55-60. http://dx.doi.org/10.1080/14660820310016066
  3. 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, Psychiatry, 75 (11), 1597-1601. http://dx.doi.org/10.1136/jnnp.2003.033100
  4. Choi-Kwon, S., Mitchell, P. H., Veith, R., Teri, L., Buzaitis, A., Cain, K. C., et al. (2009). Comparing perceived burden for Korean and American informal caregivers of stroke survivors. Rehabilitation Nursing, 34 (4), 141-150. https://doi.org/10.1002/j.2048-7940.2009.tb00270.x
  5. 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. http://dx.doi.org/10.1080/146608202760834120
  6. Goldstein, L. H., Atkins, L., Landau, S., Brown, R., & Leigh, P. N. (2006). Longitudinal predictors of psychological distress and self-esteem in people with ALS. Neurology, 67 (9), 1652-1658. http://dx.doi.org/10.1212/01.wnl.0000242886.91786.47
  7. Hirano, Y. M., Yamazaki, Y., Shimizu, J., Togari, T., & Bryce, T. J. (2006). Ventilator dependence and expressions of need: A study of patients with amyotrophic lateral sclerosis in Japan. Social Science & Medicine, 62 (6), 1403-1413. http://dx.doi.org/10.1016/j.socscimed.2005.08.015
  8. Jenkinson, C., Fitzpatrick, R., Brennan, C., & Swash, M. (1999). Evidence for the validity and reliability of the ALS assessment questionnaire. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 1, 33-40. http://dx.doi.org/10.1080/146608299300080022
  9. Kim, E. M. (2004). Quality of life model for the liver transplant recipients. Doctoral dissertation, Seoul National University, Seoul.
  10. Kim, S. H. (2006). Diagnosis and therapeutic strategies of amyotrophic lateral sclerosis. Hanyang Medical Reviews, 26 (1), 44-51.
  11. Leigh, P. N., Abrahams, S., AL-Chalabi, A., Ampong, M. A., Goldstein, L. H., Lyall, R., et al. (2003). The management of motor neurone disease. Journal of Neurology, Neurosurgery and Psychiatry, 74, iv32-iv47. http://dx.doi.org/10.1136/jnnp.74.suppl_4.iv32
  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 Science, 238 (1-2), 11-17. http://dx.doi.org/10.1016/j.jns. 2005.05.018
  13. Mitchell, P., Powell, L., Blumenthal, J., Norten, J., Ironson, G., Pitula, C. R., et al. (2003). A short social support measure for patients recovering from myocardial infarction. Journal of Cardio Pulmonary Rehabilitation, 23 (6), 398-403. http://dx.doi.org/10.1097/00008483-200311000-00001
  14. Mitsumoto, H., Bromberg, M., Johnston, W., Tandan, R., Byock, I., Lyon, M., et al. (2005). Promoting excellence in end-oflife care in ALS. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders, 6 (3), 145-154. http://dx.doi.org/10.1080/14660820510028647
  15. Nelson, N. D., Trail, M., Van, J. N., Appel, S. H., & Lai, E. C. (2003). Quality of life in patients with amyotrophic lateral sclerosis: Perceptions, coping resources, and illness characteristics. Journal of Palliative Medicine, 6 (3), 417-424. http://dx.doi.org/10.1089/109662103322144736
  16. 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. http://dx.doi.org/10.1089/jpm.2004.7.551
  17. Nygren, I., & Askmrk, H. (2006). Self-reported quality of life in amyotrophic lateral sclerosis. Journal of Palliative Medicine, 9 (2), 304-308. http://dx.doi.org/10.1089/jpm.2006.9.304
  18. Oh, H. J. (2003). A study on the functional status and depression in amyotrophic lateral sclerosis. Unpublished master's thesis, Seoul National University, Seoul.
  19. Oh, H. J., Sin, M. K., Schepp, K. G., & Choi-Kwon, S. (2012). Depressive symptoms and functional impairment among amyotrophic lateral sclerosis patients in South Korea. Rehabilitation Nursing, 37 (3), 136-144. http://dx.doi.org/10.1002/RNJ.00045
  20. Oh, S. M., Min, K. J., & Park, D. B. (1999). A study on the standardization of the hospital anxiety and depression scale for Koreans: A comparison of normal, depressed and anxious groups. Journal of Korean Neuropsychiatric Association, 38 (2), 289-296.
  21. Paek, S. H. (2005). A study on the burden of family caregivers of amyotrophic lateral sclerosis. Unpublished master's thesis, Yonsei University, Seoul.
  22. 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. https://doi.org/10.1097/00006842-200003000-00020
  23. 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. http://dx.doi.org/10.1212/WNL.55.3.388
  24. 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 (1), s75-s79. http://dx.doi.org/10.1016/S0022-510X(97)00249-9
  25. Tramonti, F., Bongioanni, P., Bernardo, C. D., Davitti, S., & Rossi, B. (2012). Quality of life of patients with amyotrophic lateral sclerosis. Psychology, Health & Medicine, 17 (5), 621-628. http://dx.doi.org/10.1080/13548506.2011.651149
  26. Uhm, D. C., Nam, E. S., Lee, H. Y., Lee, E. B., Yoon, Y. I., & Chai, G. J. (2012). Health-related quality of life in Korean patients with rheumatoid arthritis: Association with pain, disease activity, disability in activities of daily living and depression. Journal of Korean Academy of Nursing, 42 (3), 434-442. http://dx.doi.org/10.4040/jkan.2012.42.3.434
  27. Vignola, A., Guzzo, A., Calvo, A., Moglia, C., Pessia, A., Cavallo, E., et al. (2008). Anxiety undermines quality of life in ALS patients and caregivers. European Journal of Neurology, 15 (11), 1231-1236. http://dx.doi.org/10.1111/j.1468-1331.2008.02303.x
  28. Ware, J. E., & Sherbourne, C. D. (1992). The MOS 36-item shortform health survey (SF-36): I. conceptual framework and item selection. Medical Care, 30 (6), 473-483. http://dx.doi.org/10.1097/00005650-199206000-00002
  29. Young, C., Tedman, B. M., & Wilams, I. R. (1995). Disease progression and perceptions of health in patients with motor neurone disease. Journal of the Neurological Sciences, 129, S50-53. http://dx.doi.org/10.1016/0022-510X(95)00062-7
  30. Yun, M. H., & Choi-Kwon, S. (2011). Quality of life and the factors related to family caregivers caring for those with amyotrophic lateral sclerosis. Perspectives in Nursing Science, 8 (1), 62-72.
  31. Zamietra, K., Lehman, E. B., Felgoise, S. H., Walsh, S. M., Stephens, H. E., & Simmons, Z. (2012). Non-invasive ventilation and gastrostomy may not impact overall quality of life patients with ALS. Amyotrophic Lateral Sclerosis, 13 (1), 55-58. http://dx.doi.org/10.3109/17482968.2011.641570
  32. Zigmonnd, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67 (6), 361-370. http://dx.doi.org/10.1111/j.1600-0447.1983.tb09716.x

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