Original Article

Edmonton Symptom Assessment System for Outpatient Symptom Monitoring of Sickle Cell Disease

Authors: Gabriel Lopez, MD, Darla K. Liles, MD, Charles L. Knupp, MD

Abstract

Objectives: Although the extension of palliative care methodology to sickle cell disease (SCD) care has been proposed, there is no current standard for symptom assessment. Our goal was to assess the feasibility of integrating the Edmonton Symptom Assessment System (ESAS) into the outpatient management of SCD.

Methods: Seventy-five adult patients presenting for outpatient visits at a comprehensive SCD center were enrolled. Patients completed the ESAS (self-report of 10 symptoms during the last 24 hours) and a survey regarding their opinion of the ESAS at enrollment and follow-up.

Results: Pain ( P = 0.0272) was the only symptom score that changed significantly between the initial and follow-up visits. In patients with a self-reported pain crisis, pain ( P < 0.0001), fatigue ( P = 0.0025), depression ( P = 0.0458), nausea ( P = 0.0384), and symptom distress scores ( P = 0.0019) were significantly higher than for patients without a pain crisis. On the initial visit, 92% of all patients agreed or strongly agreed that the ESAS was easy to complete; 83% were satisfied or very satisfied with the ESAS as a way to report symptoms.

Conclusions: Our data suggest that the ESAS is well received and can be successfully included as part of the longitudinal symptom management strategy for SCD.

This content is limited to qualifying members.

Existing members, please login first.

If you have an existing account please login now to access this article or view your purchase options.

Purchase only this article ($15)

Create a free account, then purchase this article to download or access it online for 24 hours.

Purchase an SMJ online subscription ($75)

Create a free account, then purchase a subscription to get complete access to all articles for a full year.

Purchase a membership plan (fees vary)

Premium members can access all articles plus recieve many more benefits. View all membership plans and benefit packages.

References

1. Rees DC, Williams TN, Gladwin MT. Sickle-cell disease. Lancet 2010;376:2018-2031.
 
2. Smith WR, Bovbjerg VE, Penberthy LT, et al. Understanding pain and improving management of sickle cell disease: the PiSCES study. J Natl Med Assoc 2005;97:183-193.
 
3. Ballas SK, Gupta K, Adams-Graves P. Sickle cell pain: a critical reappraisal. Blood 2012;120:3647-3656.
 
4. Sutton M, Atweh GF, Cashman TD, et al. Resolving conflicts: misconceptions and myths in the care of the patient with sickle cell disease. Mt Sinai J Med 1999;66:282-285.
 
5. McClain BC, Kain ZN. Pediatric palliative care: a novel approach to children with sickle cell disease. Pediatrics 2007;119:612-614.
 
6. Benjamin L. Pain management in sickle cell disease: palliative care begins at birth? Hematology Am Soc Hematol Educ Program 2008;466-474.
 
7. Bruera E, Hui D. Integrating supportive and palliative care in the trajectory of cancer: establishing goals and models of care. J Clin Oncol 2010;28:4013-4017.
 
8. Bruera E, Kuehn N, Miller MJ, et al. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991;7:6-9.
 
9. Chang VT, Hwang SS, Feuerman M. Validation of the Edmonton Symptom Assessment Scale. Cancer 2000;88:2164-2171.
 
10. Davison SN, Jhangri GS, Johnson JA. Longitudinal validation of a modified Edmonton symptom assessment system (ESAS) in haemodialysis patients. Nephrol Dial Transplant 2006;21:3189-3195.
 
11. McClish DK, Penberthy LT, Bovbjerg VE, et al. Health related quality of life in sickle cell patients: the PiSCES project. Health Qual Life Outcomes 2005;3:50.