An international survey of 120 patients and 34 healthcare professionals explored 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.
This article may be of interest to WM patients and their caregivers.
https://www.mdpi.com/2072-6694/17/22/3609