Evaluating the Effectiveness of the Edmonton Symptom Assessment System (ESAS) in Adults with Sickle Cell Disease within a Comprehensive Hemoglobinopathy Clinic

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Evaluating the Effectiveness of the Edmonton Symptom Assessment System (ESAS) in Adults with Sickle Cell Disease within a Comprehensive Hemoglobinopathy Clinic

Evaluating the Effectiveness of the Edmonton Symptom Assessment System (ESAS) in Adults with Sickle Cell Disease within a Comprehensive Hemoglobinopathy Clinic

Stephan Ducharme
Schulich School of Medicine & Dentistry

FUNDER: Schulich-Windsor Campus Opportunities for Research Excellence Program (SWORP)

GRANT DURATION: 2026-2027

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Sickle cell disease (SCD) is one of the most common inherited blood disorders worldwide and is characterized by chronic anemia and recurrent microvascular ischemia, resulting in a complex, multisystem symptom burden(1,2). Approximately 8 million individuals globally are affected, over 90% of whom identify as Black(3,4). Despite its prevalence, significant gaps in care persist, driven by limited provider familiarity with the disease, structural discrimination, and insufficient integration of patient perspectives into clinical decision making(1,57). The inherently subjective nature of SCD-related symptoms further complicates standardized assessment and contributes to ongoing challenges in symptom recognition and management. Patient-reported outcome (PRO) tools offer a promising approach to assessing symptom burden from the patient perspective. By providing a standardized method for patients to describe symptoms, PROs support patient-centred care and ensure clinicians are aware of concerns that may otherwise be overlooked(8-10). The Edmonton Symptom Assessment System (ESAS) is a validated symptom assessment tool developed for patients with advanced cancer(11). Although studies suggest utility of the ESAS in outpatient SCD settings, patient perspectives on its relevance and acceptability remain underexplored(12,13). This cross-sectional study will assess patient perspectives on the ESAS in outpatient adult SCD clinics in Windsor and Hamilton, Ontario, representing specialized and regional SCD care centres, respectively. Feasibility metrics will be assessed, followed by surveys and virtual focus groups to explore usability, relevance, and perceived value from the patient perspective. Results from this study will inform strategies to improve PRO use and support a more patient-centred approach to SCD symptom assessment and management.
We aim to better understand patient perspectives regarding the value of the ESAS for symptom reporting in SCD care. Focus group discussions will inform how the ESAS influences patient–provider communication, including the prioritization of care during clinical encounters. Findings will identify symptom domains that patients perceive as well captured by ESAS and areas viewed as insufficient. These findings will support development of more comprehensive approaches to symptom recognition and management in SCD, particularly for currently under-recognized symptoms. Feasibility of the ESAS use in outpatient SCD clinics will be evaluated through completion rates and time to completion. Patient feedback will further inform potential improvements to the acceptability and utility of ESAS implementation.

CO-INVESTIGATORS

Windsor Regional Hospital

  • Dr. Andrea Cervi
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