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Patient Perception of the Relevance of Quality-of-Life Questionnaires in Waldenström Macroglobulinaemia: An International Survey
by
, , ,
Jahanzaib Khwaja
1
,
Sotirios Bristogiannis
2,
Ibrahim Tohidi-Esfahani
3,
Yadanar Lwin
4,
Nicole Japzon
2,
David Young
5,
Sossana Delibasi
2,
Shirley D’Sa
1,
Judith Trotman
3 and
Charalampia Kyriakou
1,* 1
Department of Haematology, University College London Hospital, London NW1 2BU, UK
2
Department of Haematology, Evangelismos Hospital, Athens 10676, Greece
3
Department of Haematology, Concord Repatriation General Hospital, University of Sydney, Concord 2139, Australia
4
Department of Haematology, Nottingham University Hospital NHS Trust, Nottingham NG7 2GT, UK
5
WMozzies, Australian Affiliate International Waldenstroms Macroglobulinaemia Foundation, Sydney, Australia
*
Author to whom correspondence should be addressed.
Cancers 2025, 17(22), 3609; https://doi.org/10.3390/cancers17223609 (registering DOI)
Submission received: 18 August 2025
/
Revised: 2 October 2025
/
Accepted: 6 November 2025
/
Published: 8 November 2025
(This article belongs to the Section Cancer Survivorship and Quality of Life)
Simple Summary
We conducted an international survey of 120 patients and 34 healthcare professionals to explore how well existing quality-of-life questionnaires capture what matters most to people with Waldenstrom macroglobulinaemia. Patients highlighted fatigue, mobility, pain, tingling, breathlessness, sleep issues, emotional wellbeing, and family support as the most relevant topics, while many questions about other issues such as post-traumatic stress, education and training and financial support were seen as less relevant. Commonly used questionnaires do not fully reflect patients’ real experiences, suggesting the need for WM-specific tools.
Abstract
Waldenström Macroglobulinaemia is an indolent disease which is recognised as contributing to a diverse range of disabling symptoms which can impact quality of life. Little data are available in evaluating patient and healthcare professional views on quality-of-life questionnaires (QLQ) used to evaluate quality of life in Waldenström Macroglobulinaemia. We aimed to assess patient perception of their disease and the relevance of the currently employed QLQs in practice by patients and healthcare professionals. One-hundred-and-twenty patients (22% treatment-naïve) and thirty-four healthcare professionals completed an international survey to understand their perception of the relevance of the currently employed QLQ. Out of 415 questions, 257 questions were classified by patients as relevant. Five themes were discerned as relevant: fatigue, mobility, dyspnoea, paraesthesia, pain in the hands and feet, sleep (physical health limitations); contentment (psychological impact); social and family support. The following were considered irrelevant: lumps or swelling, dry mouth, trouble hearing, sexual dysfunction (physical symptoms); post-traumatic stress (psychological impact); education and training and financial support. Healthcare professionals identified EORTC QLQ-C30 as the most commonly used instruments for Waldenström Macroglobulinaemia trials.
