Myoung Soo Kim; Hyung-Ik Shin; Yusun Min; Jung Yoon Kim; Jung Soon Kim

doi:10.4040/jkan.2011.41.3.354

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Original Article
Correlation between Severe ALS Patient-Caregiver Couples' Characteristics and Caregivers' Health Related Quality of Life: Myoung Soo Kim, Hyung-Ik Shin, Yusun Min, Jung Yoon Kim, Jung Soon Kim; Journal of Korean Academy of Nursing 2011;41(3):354-363.
DOI: https://doi.org/10.4040/jkan.2011.41.3.354
Published online: June 13, 2011

¹Assistant Professor, Department of Nursing, Pukyong National University, Busan, Korea.

²Assistant Professor, Department of Rehabilitation Medicine, College of Medicine, Seoul National University, Seoul, Korea.

³Clinical Instructor, Department of Rehabilitation Medicine, Seoul National University, Bundang Hospital, Seongnam, Korea.

⁴Clinical Instructor, Department of Rehabilitation Medicine, Seoul National University Hospital, Seoul, Korea.

⁵Professor, College of Nursing, Pusan National University College of Nursing, Yangsan, Korea.

Address reprint requests to: Kim, Myoung Soo. Department of Nursing, Pukyong National University, 599-1 Daeyeon 3-dong, Nam-gu, Busan 608-737, Korea. Tel: +82-51-629-5782, Fax: +82-51-629-5789, kanosa@pknu.ac.kr

• Received: November 24, 2010 • Accepted: June 7, 2011

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Abstract
NOTES
REFERENCES

Abstract

Purpose
The purpose of this cross-sectional study was to examine the relationship between characteristics of severe ALS patient-caregiver couples and health related quality of life (HRQoL) in family caregivers.
Methods
The participants in this study were 89 pairs of ALS patients using ventilators and a family caregiver. The characteristics of the ALS patients and caregivers, Korean-Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised, Zarit Burden Interview and SF-36 were measured in this study. The data were collected from August 2008 to April 2009. Descriptive statistics, Pearson correlation coefficients, and canonical correlation were used for data analysis.
Results
The physical component summary and mental component summary of the HRQoL score for family caregivers were 147.49±31.63 and 129.09±35.83, respectively. HRQoL for caregivers was related to characteristics of the ALS patient-caregiver couples, such as patient's gender, caregiver's age, gender, marital status, daily time spent in caregiving and burden with one significant canonical variable. The significant variate showed that the lower the age, the time spent in caregiving and the burden of caregivers, the higher the HRQoL of caregivers.
Conclusion
The support systems for caregivers considering caregiver characteristics such as demographics and burden should be implemented to improve the HRQoL of caregivers.
Keywords: Amyotrophic lateral sclerosis; Quality of life; Ventilator; Caregivers

This work was supported by research funds from Pukyong National University.

REFERENCES

1. Bremer BA, Simone AL, Walsh S, Simmons Z, Felgoise SH. Factors supporting quality of life over time for individuals with amyotrophic lateral sclerosis: The role of positive self-perception and religiosity. Annals of Behavioral Medicine. 2004;28:119–125.Article PubMed
2. Calvo A, Moglia C, Ilardi A, Cammarosano S, Gallo S, Canosa A, et al. Religiousness is positively associated with quality of life of ALS caregivers. Amyotrophic Lateral Sclerosis. 2011;12:168–171. doi:10.3109/17482968.2011.560947.Article PubMed
3. Carod-Artal FJ, Ferreira-Coral L, Trizotto DS, Menezes-Moreira C. Burden and perceived health status among caregivers of stroke patients. Cerebrovascular Diseases. 2009;28:472–480. doi:10.1159/000236525.Article PubMed PDF
4. Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology. 2007;68:923–926.Article PubMed
5. Goldstein LH, Atkins L, Landau S, Brown RG, Leigh PN. Longitudinal predictors of psychological distress and self-esteem in people with ALS. Neurology. 2006;67:1652–1658.Article PubMed
6. Haverkamp LJ, Appel V, Appel SH. Natural history of amyotrophic lateral sclerosis in a database population. Validation of a scoring system and a model for survival prediction. Brain. 1995;118:707–719.Article PubMed
7. Hecht MJ, Graesel E, Tigges S, Hillemacher T, Winterholler M, Hilz MJ, et al. Burden of care in amyotropic lateral sclerosis. Palliative Medicine. 2003;17:327–333.PubMed
8. Kaub-Wittemer D, Steinbüchel N, Wasner M, Laier-Groeneveld G, Borasio GD. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. Journal of Pain and Symptom Management. 2003;26:890–896. doi:10.1016/S0885-3924(03)00323-3.Article PubMed
9. Kim HY, Park KH, Koh SH, Lee SC, Nam YH, Kim JH, et al. Korean version of amyotrophic lateral sclerosis functional rating scale-revised: A pilot study on the reliability and validity. Journal of the Korean Neurological Association. 2007;25:149–154.
10. Kim JS, Kim MS, Kim SO, Yoo YJ, Won DY. Factors influencing dementia caregivers' health-related quality of life. Journal of Korean Academy of Community Health Nursing. 2007;18:232–241.
11. Korea Centers for Disease Control and Prevention. Guidance to medical expenses support of the patients with rare and incurable disease. 2009;Seoul, Ministry for health welfare and family affairs.
12. Lee EH, Jeong YH, Kim JS, Song RY, Hwang KY. Statistical method for health care research. 2003;Seoul, Koonja Publisher.
13. Lee HS, Kim DK, Ko HJ, Gu HM, Kwon UJ, Kim JH. Measurement of stress in the caregivers of dementia patients: Reliability and validity of the revised-memory and behavior problem checklist and the burden interview. Korean Journal of Clinical Psychology. 2004;23:1029–1050.
14. Lo Coco D, Marchese S, La Bella V, Piccoli T, Lo Coco A. The amyotrophic lateral sclerosis functional rating scale predicts survival time in amyotrophic lateral sclerosis patients on invasive mechanical ventilation. Chest. 2007;132:64–69.Article PubMed
15. Lopez-Bastida J, Perestelo-Perez L, Monton-Alvarez F, Serrano-Aguilar P, Alfonso-Sanchez JL. Social economic costs and health-related quality of life in patients with amyotrophic lateral sclerosis in Spain. Amyotrophic Lateral Sclerosis. 2009;10:237–243. doi:10.1080/17482960802430781.Article PubMed
16. Mitsumoto H, DelBene M. Improving the quality of life for people with ALS: The challenge ahead. Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders. 2000;1:329–336.Article PubMed
17. Mitsumoto H, Rabkin JG. Palliative care for patients with amyotrophic lateral sclerosis: "Prepare for the worst and hope for the best". Journal of the American Medical Association. 2007;298:207–216. doi:10.1001/jama.298.2.207.PubMed
18. Morimoto T, Schreiner AS, Asano H. Caregiver burden and health related quality of life among Japanese stroke caregivers. Age and Ageing. 2003;32:218–223. doi:10.1093/ageing/32.2.218.Article PubMed
19. Nolan MT, Kub J, Hughes MT, Terry PB, Astrow AB, Carbo CA, et al. Family health care decision making and self-efficacy with patients with ALS at the end of life. Palliative and Supportive Care. 2008;6:273–280. doi:10.1017/S1478951508000412.Article PubMed
20. Park KH, Kim HY, Nam YH, Kim J, Joo IS, Sung JJ, et al. Preliminary study on clinical characteristics and caregivers' burden of Korean patients with amyotrophic lateral sclerosis: Survey based on database of Korea ALS association. Journal of the Korean Neurological Association. 2006;24:252–259.
21. Phukan J, Hardiman O. The management of amyotrophic lateral sclerosis. Journal of Neurology. 2009;256:176–186. doi:10.1007/s00415-009-0142-9.Article PubMed PDF
22. Rabkin JG, Albert SM, Rowland LP, Mitsumoto H. How common is depression among ALS caregivers? A longitudinal study. Amyotrophic Lateral Sclerosis. 2009;10:448–455. doi:10.3109/17482960802459889.Article PubMed PMC
23. Rabkin JG, Wagner GW, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosomatic Medicine. 2000;62:271–279.Article PubMed
24. Roach AR, Averill AJ, Segerstrom SC, Kasarskis EJ. The dynamics of quality of life in ALS patients and caregivers. Annals of Behavioral Medicine. 2009;37:197–206. doi:10.1007/s12160-009-9092-9.Article PubMed
25. Schölzel-Dorenbos CJ, Draskovic I, Vernooij-Dassen MJ, Olde Rikkert MG. Quality of life and burden of spouses of Alzheimer disease patients. Alzheimer Disease and Associated Disorders. 2009;23:171–177. doi:10.1097/WAD.0b013e318190a260.Article PubMed
26. Ware JE, Kosinski M, Dewey JE. How to score version 2 of the SF-36 health survey (standard & acute forms). 2000;Lincoln, RI, Quality Metric Incorporated.
27. Winter Y, Schepelmann K, Spottke AE, Claus D, Grothe C, Schröder R, et al. Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy. Journal of Neurology. 2010;257:1473–1481. doi:10.1007/s00415-010-5549-9.Article PubMed PDF
28. Wolfson C, Kilborn S, Oskoui M, Genge A. Incidence and prevalence of amyotrophic lateral sclerosis in Canada: A systematic review of the literature. Neuroepidemiology. 2009;33:79–88. doi:10.1159/000222089.Article PubMed PDF
29. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist. 1980;20:649–655.Article PubMed

Table 1

Characteristics of ALS Patients and Caregivers (N=89)

Table 2

Descriptive Statistics for Study Variables (N=89)

PCS=physical component summary; MCS=mental component summary; PF=physical functioning; RP=role limitations due to physical health problems; BP=bodily pain; GH=general health; VT=vitality; SF=social functioning; RE=role limitations due to emotional problems; MH=mental health.

Table 3

Correlation among Care-related Characteristics and Caregivers' HRQoL (N=89)

PCS=physical component summary; MCS=mental component summary; YVU=years since starting to use ventilator; TSC=time spent caregiving; HRQoL=health related quality of life.

Table 4

Canonical Correlation between Care-related Characteristics and Caregivers' HRQoL (N=89)

HRQoL=health related quality of life; PCS=physical component summary; MCS=mental component summary.

Figure & Data

REFERENCES

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Correlation between Severe ALS Patient-Caregiver Couples' Characteristics and Caregivers' Health Related Quality of Life

J Korean Acad Nurs. 2011;41(3):354-363. Published online June 13, 2011

DOI: https://doi.org/10.4040/jkan.2011.41.3.354

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Correlation between Severe ALS Patient-Caregiver Couples' Characteristics and Caregivers' Health Related Quality of Life

Table 1

Characteristics of ALS Patients and Caregivers (N=89)

Table 2

Descriptive Statistics for Study Variables (N=89)

Table 3

Correlation among Care-related Characteristics and Caregivers' HRQoL (N=89)

PCS=physical component summary; MCS=mental component summary; YVU=years since starting to use ventilator; TSC=time spent caregiving; HRQoL=health related quality of life.

Table 4

Canonical Correlation between Care-related Characteristics and Caregivers' HRQoL (N=89)

HRQoL=health related quality of life; PCS=physical component summary; MCS=mental component summary.

Table 1 Characteristics of ALS Patients and Caregivers (N=89)

Table 2 Descriptive Statistics for Study Variables (N=89)

Table 3 Correlation among Care-related Characteristics and Caregivers' HRQoL (N=89)

PCS=physical component summary; MCS=mental component summary; YVU=years since starting to use ventilator; TSC=time spent caregiving; HRQoL=health related quality of life.

Table 4 Canonical Correlation between Care-related Characteristics and Caregivers' HRQoL (N=89)

HRQoL=health related quality of life; PCS=physical component summary; MCS=mental component summary.