Shirley D’Sa: How Well Do Standard QoL Questionnaires Reflect Reality for People with Waldenström Macroglobulinemia (WM)?
Shirley D’Sa, Professor of Haematology, Medical Doctor at UCLH NHS Foundation Trust, Published on LinkedIn:
“New study alert!!
How well do standard QoL questionnaires reflect reality for people with Waldenström Macroglobulinemia (WM)?
A recent international survey of 120 WM patients + 34 healthcare professionals found that many of the questions in commonly used quality-of-life (QoL) questionnaires miss what truly matters to patients.
Please read the article!
Title: Patient Perception of the Relevance of Quality-of-Life Questionnaires in Waldenström Macroglobulinaemia: An International Survey
Authors: Jahanzaib Khwaja, Sotirios Bristogiannis, Ibrahim Tohidi-Esfahani, Yadanar Lwin, Nicole Japzon, David Young, Sossana Delibasi, Shirley D’Sa, Judith Trotman, Charalampia Kyriakou
Read full study here.
Bottom line: Generic cancer QoL questionnaires (e.g. EORTC QLQ-C30) — though widely used — don’t fully capture the lived experience and symptom burden in WM. There’s a clear need for WM-specific patient-reported outcomes”
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