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- Talk
- Canada
Identifying Key Functional Domains of Health-Related Quality of Life and Experience Domains of Healthcare Services in Adult Patients with Extremity Soft Tissue Sarcoma
Description
This presentation, led by Krista Goulding, focuses on the SARC-QoL study, a collaborative project between the Mayo Clinic and McGill University. The primary aim is to identify key domains related to Health-Related Quality of Life (HRQoL) for patients with extremity soft-tissue sarcoma, particularly their experiences with healthcare services. It highlights the growing importance of preference-based outcomes that reflect what matters most to patients.
In the introductory section, Krista outlines the alarming issues faced by soft-tissue sarcoma patients, including decreased quality of life, higher rates of depression, and various unmet needs compared to other cancer populations. The SARC-QoL study aims to develop a disease-specific, patient-centered outcome measure. Krista details the study's methodology, employing a sequential exploratory mixed-method research design and grounded-theory qualitative approaches, with input from 28 patients through focus groups conducted in both English and French.
She shares insights on the patients' functional domains mapped to the Wilson and Cleary Model of HRQoL, emphasizing biological and psychological impacts such as fatigue and anxiety associated with illness. Furthermore, the study identifies negative themes regarding healthcare experiences, such as insufficient communication and long wait times, which led to patients feeling unsupported during critical phases of their care. For patient-centered care improvements, Krista advocates for enhanced psychosocial services and more integrated approaches that address both clinical and emotional needs. The presentation concludes with ongoing efforts to develop a short clinical tool aimed at making an actionable impact on patient follow-up care.