Hostname: page-component-78c5997874-ndw9j Total loading time: 0 Render date: 2024-11-10T15:42:16.273Z Has data issue: false hasContentIssue false
  • English
  • Français

Testing the feasibility of using the Edmonton Symptom Assessment System (ESAS) to assess caregiver symptom burden

Published online by Cambridge University Press:  07 March 2017

Kimberson Tanco ,
Marieberta Vidal ,
Joseph Arthur ,
Marvin Delgado Guay ,
David Hui ,
Diane Liu ,
Gary Chisholm  and
Eduardo Bruera
Kimberson Tanco*
Affiliation:
Department of Palliative, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas
Marieberta Vidal
Affiliation:
Department of Palliative, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas
Joseph Arthur
Affiliation:
Department of Palliative, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas
Marvin Delgado Guay
Affiliation:
Department of Palliative, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas
David Hui
Affiliation:
Department of Palliative, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas
Diane Liu
Affiliation:
Department of Biostatistics, The University of Texas MD Anderson Cancer Center, Houston, Texas
Gary Chisholm
Affiliation:
Department of Gynecologic Oncology and Reproductive Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas
Eduardo Bruera
Affiliation:
Department of Palliative, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, Texas
*
Address correspondence and reprint requests to: Kimberson Tanco, Department of Palliative Care, Rehabilitation, and Integrative Medicine, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd. Unit 1414, Houston, Texas 77030. E-mail: kctanco@mdanderson.org.
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Caregiver symptom assessment is not part of regular clinical cancer care. The ESAS (Edmonton Symptom Assessment System) is a multidimensional tool regularly used to measure symptom burden in patients but not caregivers. The objectives of the present study were to determine the feasibility of the ESAS in caregiver completion (defined as ≥ 9 of 12 items) and determine its concurrent validity with the Zarit Burden Interview–12 (ZBI–12).

Method:

We conducted a prospective study on 90 patient–primary caregiver dyads seen in an outpatient supportive care center in a cancer center. The 12 item ESAS–FS (financial–spiritual) was completed by the dyads along with other clinical and psychosocial measures.

Results:

The caregiver ESAS was found to be feasible (90/90 caregivers, 100% completed ≥ 9/12 items) and useful (66/90 caregivers, 73%) by caregivers to report their symptom burden. Some 68 of 90 (76%) caregivers had symptom distress scores ≥ 4 on at least one symptom. A significant association was found between the ESAS scores of caregivers and patients for fatigue (0.03), depression (<0.01), anxiety (<0.01), sleep (0.05), well-being (<0.01), financial distress (<0.01), spiritual pain (<0.01), and total ESAS score (<0.01). Concurrent validity with the ZBI–12 was not achieved (r = 0.53, p = 0.74). A significant correlation was found between caregiver ESAS scores and time spent feeding, housekeeping, total combined caregiver activities, and total ZBI–12 scores.

Significance of results:

The caregiver ESAS is a feasible tool and was found useful by our caregivers. Further research is needed to modify the ESAS based on caregivers' recommendations, and further psychometric studies need to be conducted.

Keywords

Caregiver ESASCaregiver symptom assessmentCaregiver symptom burden
Type
Original Articles
Information
Palliative & Supportive Care , Volume 16 , Special Issue 1: Special Instruments – Assessment and Measure Issues in Palliative Care , February 2018 , pp. 14 - 22
Copyright
Copyright © Cambridge University Press 2017 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Anderson, F., Downing, G.M., Hill, J., et al. (1996). Palliative performance scale (PPS): A new tool. Journal of Palliative Care, 12(1), 5–11.Google Scholar
Bedard, M., Molloy, D.W., Squire, L., et al. (2001). The Zarit Burden Interview: A new short version and screening version. The Gerontologist, 41(5), 652–657.Google Scholar
Berger, A.M., Mooney, K., Alvarez-Perez, A., et al. (2015). Cancer-related fatigue, version 2.2015. Journal of the National Comprehensive Cancer Network, 13(8), 1012–1039.Google Scholar
Bruera, E., Kuehn, N., Miller, M.J., et al. (1991). The Edmonton Symptom Assessment System (ESAS): A simple method for the assessment of palliative care patients. Journal of Palliative Care, 7(2), 6–9.CrossRefGoogle ScholarPubMed
Bruera, E., Bush, S.H., Willey, J., et al. (2009). Impact of delirium and recall on the level of distress in patients with advanced cancer and their family caregivers. Cancer, 115(9), 2004–2012. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2752862/.Google Scholar
Carvajal, A., Centeno, C., Watson, R., et al. (2011). A comprehensive study of psychometric properties of the Edmonton Symptom Assessment System (ESAS) in Spanish advanced cancer patients. European Journal of Cancer, 47(12), 1863–1872. Epub ahead of print Apr 22.Google Scholar
Clipp, E.C. & Moore, M.J. (1995). Caregiver time use: An outcome measure in clinical trial research on Alzheimer's disease. Clinical Pharmacology and Therapeutics, 58(2), 228–236.Google Scholar
Costa-Requena, G., Cristofol, R. & Canete, J. (2012). Caregivers' morbidity in palliative care unit: Predicting by gender, age, burden and self-esteem. Supportive Care in Cancer, 20(7), 1465–1470. Epub ahead of print Aug 4, 2011.Google Scholar
Deeken, J.F., Taylor, K.L., Mangan, P., et al. (2003). Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. Journal of Pain and Symptom Management, 26(4), 922–953.Google Scholar
Del Ferraro, C., Ferrell, B., Van Zyl, C., et al. (2014). Improving palliative cancer care. Journal of the Advanced Practitioner in Oncology, 5(5), 331–338. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4457171/.Google Scholar
Delgado-Guay, M., Ferrer, J., Rieber, A.G., et al. (2015). Financial distress and its associations with physical and emotional symptoms and quality of life among advanced cancer patients. The Oncologist, 20(9), 1092–1098. Epub ahead of print Jul 23. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4571810/.CrossRefGoogle ScholarPubMed
Delgado-Guay, M.O., Chisholm, G., Williams, J., et al. (2016). Frequency, intensity, and correlates of spiritual pain in advanced cancer patients assessed in a supportive/palliative care clinic. Palliative & Supportive Care, 14(4), 341–348. Epub ahead of print Oct 20, 2015.Google Scholar
Dev, R. & Dev, M. (2015). Family caregivers. In:Textbook of Palliative Medicine and Supportive Care, 2nd ed. Bruera, E. et al. (eds), pp. 1063–1074. Boca Raton, FL: CRC Press.Google Scholar
Edwards, B. & Ung, L. (2002). Quality of life instruments for caregivers of patients with cancer: A review of their psychometric properties. Cancer Nursing, 25(5), 342–349.Google Scholar
Grunfeld, E., Coyle, D., Whelan, T., et al. (2004). Family caregiver burden: Results of a longitudinal study of breast cancer patients and their principal caregivers. Canadian Medical Association Journal, 170(12), 1795–1801. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC419766/.Google Scholar
Hall, S.F. (2006). A user's guide to selecting a comorbidity index for clinical research. Journal of Clinical Epidemiology, 59(8), 849–855. Epub ahead of print May 23.Google Scholar
Harrold, J., Rickerson, E., Carroll, J.T., et al. (2005). Is the Palliative Performance Scale a useful predictor of mortality in a heterogeneous hospice population? Journal of Palliative Medicine, 8(3), 503–509.Google Scholar
Higginson, I.J. & Carr, A.J. (2001). Measuring quality of life: Using quality of life measures in the clinical setting. BMJ, 322(7297), 1297–1300. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1120388/.CrossRefGoogle ScholarPubMed
Higginson, I.J., Gao, W., Jackson, D., et al. (2010). Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions. Journal of Clinical Epidemiology, 63(5), 535–542.Google Scholar
Hui, D., Shamieh, O., Paiva, C.E., et al. (2016). Minimal clinically important difference in the physical, emotional, and total symptom distress scores of the Edmonton Symptom Assessment System. Journal of Pain and Symptom Management, 51(2), 262–269. Epub ahead of print Oct 19. Available from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4733575/.Google Scholar
Jensen, S. & Given, B.A. (1991). Fatigue affecting family caregivers of cancer patients. Cancer Nursing, 14(4), 181–187.Google Scholar
Kang, J.H., Kwon, J.H., Hui, D., et al. (2013). Changes in symptom intensity among cancer patients receiving outpatient palliative care. Journal of Pain and Symptom Management, 46(5), 652–660. Epub ahead of print Apr 6.CrossRefGoogle ScholarPubMed
Laizner, A.M., Yost, L.M., Barg, F.K., et al. (1993). Needs of family caregivers of persons with cancer: A review. Seminars in Oncology Nursing, 9(2), 114–120.Google Scholar
Matthews, B.A. (2003). Role and gender differences in cancer-related distress: A comparison of survivor and caregiver self-reports. Oncology Nursing Forum, 30(3), 493–499.Google Scholar
McHugh, M.E., Arnold, J. & Buschman, P.R. (2012). Nurses leading the response to the crisis of palliative care for vulnerable populations. Nursing Economics, 30(3), 140–147.Google Scholar
Morita, T., Tsunoda, J., Inoue, S., et al. (1999). The Palliative Prognostic Index: A scoring system for survival prediction of terminally ill cancer patients. Supportive Care in Cancer, 7(3), 128–133.CrossRefGoogle ScholarPubMed
Morita, T., Tsunoda, J., Inoue, S., et al. (2001). Improved accuracy of physicians' survival prediction for terminally ill cancer patients using the Palliative Prognostic Index. Palliative Medicine, 15(5), 419–424.Google Scholar
Moro, C., Brunelli, C., Miccinesi, G., et al. (2006). Edmonton Symptom Assessment Scale: Italian validation in two palliative care settings. Supportive Care in Cancer, 14(1), 30–37. Epub ahead of print Jun 4, 2005.Google Scholar
Nekolaichuk, C.L., Maguire, T.O., Suarez-Almazor, M., et al. (1999). Assessing the reliability of patient, nurse, and family caregiver symptom ratings in hospitalized advanced cancer patients. Journal of Clinical Oncology, 17(11), 3621–3630.Google Scholar
Nekolaichuk, C., Watanabe, S. & Beaumont, C. (2008). The Edmonton Symptom Assessment System: A 15-year retrospective review of validation studies (1991–2006). Palliative Medicine, 22(2), 111–122.CrossRefGoogle ScholarPubMed
Oberst, M.T. & Scott, D.W. (1988). Postdischarge distress in surgically treated cancer patients and their spouses. Research in Nursing & Health, 11(4), 223–233.Google Scholar
Philips, P.L. & Lazenby, M. (2013). The emotional and spiritual well-being of hospice patients in Botswana and sources of distress for their caregivers. Journal of Palliative Medicine, 16(11), 1438–1445. Epub ahead of print Oct 1.Google Scholar
Schott-Baer, D. (1993). Dependent care, caregiver burden, and self-care agency of spouse caregivers. Cancer Nursing, 16(3), 230–236.Google Scholar
Selby, D., Cascella, A., Gardiner, K., et al. (2010). A single set of numerical cutpoints to define moderate and severe symptoms for the Edmonton Symptom Assessment System. Journal of Pain and Symptom Management, 39(2), 241–249. Epub ahead of print Dec 5, 2009.CrossRefGoogle ScholarPubMed
Siegel, K., Raveis, V.H., Houts, P., et al. (1991). Caregiver burden and unmet patient needs. Cancer, 68(5), 1131–1140. Available from http://onlinelibrary.wiley.com/doi/10.1002/1097-0142(19910901)68:5%3C1131::AID-CNCR2820680541%3E3.0.CO;2-N/pdf.Google Scholar
Sundararajan, V., Henderson, T., Perry, C., et al. (2004). New ICD–10 version of the Charlson Comorbidity Index predicted in-hospital mortality. Journal of Clinical Epidemiology, 57(12), 1288–1294.Google Scholar
Swarm, R.A., Abernathy, A.P., Anghelescu, D.L., et al. (2013). Adult cancer pain. Journal of the National Comprehensive Cancer Network, 11(8), 992–1022.Google Scholar
Vignaroli, E., Pace, E.A., Willey, J., et al. (2006). The Edmonton Symptom Assessment System as a screening tool for depression and anxiety. Journal of Palliative Medicine, 9(2), 296–303.Google Scholar
Watanabe, S.M., Nekolaichuk, C.L. & Beaumont, C. (2012). The Edmonton Symptom Assessment System, a proposed tool for distress screening in cancer patients: Development and refinement. Psycho-Oncology, 21(9), 977–985. Epub ahead of print Jun 13, 2011.Google Scholar
World Health Organization (2016). WHO Definition of Palliative Care. Geneva: World Health Organization. Available from http://www.who.int/cancer/palliative/definition/en/.Google Scholar
Yennurajalingam, S., Kwon, J.H., Urbauer, D.I., et al. (2013). Consistency of symptom clusters among advanced cancer patients seen at an outpatient supportive care clinic in a tertiary cancer center. Palliative & Supportive Care, 11(6), 473–480. Epub ahead of print Feb 7.Google Scholar
Yesilbalkan, O.U., Ozkutuk, N. & Ardahan, M. (2010). Comparison of quality of life of Turkish cancer patients and their family caregivers. Asian Pacific Journal of Cancer Prevention, 11(6), 1575–1579. Available from http://journal.waocp.org/article_25416_7bd622def26139c845dc4fe7b6a2a5c0.pdf.Google Scholar
Supplementary material: File

Tanco supplementary material

Appendix

Download Tanco supplementary material(File)
File 14.3 KB