In chronic myeloid leukaemia (CML), 20–25% of patients switch medication due to troublesome side effects. Until now, there was no reliable way to measure these symptoms. Together with 300 patients and healthcare professionals, we developed a new questionnaire that is both accurate and practical. Patients appreciate the filter questions, which make a shorter version possible. One striking finding: sexual complaints were frequent and severe, yet absent from existing tools. We also discovered that for one-third of symptoms, severity differs between commonly used drugs—sometimes by as much as 30%. These insights help clinicians choose better alternatives when switching is needed. Haematologists expect that using this questionnaire will ensure patient experiences are reflected in treatment guidelines. In addition, they identified 14 knowledge gaps on side-effect symptoms, paving the way for improvements to current CML guidelines.
Yolba Smit is trained as a medical doctor and epidemiologist, specializing in evidence-based medicine and guideline development. She has contributed to over twenty (inter)national projects and has worked as a researcher and project leader in Haematology at Radboud university medical center since 2016. Her PhD focused on improving the use of patient-reported toxicity symptoms in clinical care and guideline development.