Patients', clinicians' and research's priorities on important outcomes in multiple myeloma: A mixed‐methods study

Research in multiple myeloma increasingly relies on surrogate end-points to expedite approvals, yet these may not reflect patient priorities. We conducted a mixed-methods study to identify outcomes valued by patients and clinicians and compare them with end-points used in randomized controlled trials (RCTs). Interviews with 10 patients and 6 clinicians identified treatment priorities, which, together with end-points from a systematic review of myeloma RCTs, informed tailored surveys, completed by 117 patients and 105 clinicians. Both groups ranked quality of life (QoL) as most important (odds ratio [OR] 1.01; 95% confidence interval [CI] 0.55-1.87). Clinicians more often prioritized overall survival (OS) (OR 1.92; 95% CI 1.05-3.50) and progression-free survival (PFS) (OR 5.37; 95% CI 1.95-14.79), whereas patients prioritized pain reduction (OR 0.03; 95% CI 0.00-0.23). Compared with RCT end-points, patients emphasized QoL (OR 0.03; 95% CI 0.01-0.07) and pain elimination (OR 0.05; 95% CI 0.02-0.11), while trials favoured PFS (OR 6.33; 95% CI 2.53-15.83) and response (OR 17.75; 95% CI 5.56-56.61). Clinicians aligned with trials on PFS but valued QoL and OS more highly. QoL emerged as a shared priority, underscoring the need for patient-centred trial designs that better capture outcomes meaningful to those living with myeloma.

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Publication Details

Journal
British Journal of Haematology
Published
2026-02-26
DOI
https://doi.org/10.1111/bjh.70396
Primary Topic
Multiple Myeloma Research and Treatments
Type
article
Field-Weighted Citation Impact
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article

Patients', clinicians' and research's priorities on important outcomes in multiple myeloma: A mixed‐methods study

Oliver Van Oekelen, Aris Liakos, Sofia Chissan, Evdoxia Hatjiharissi et al.
British Journal of Haematology
Multiple Myeloma Research and Treatments
article

Patients', clinicians' and research's priorities on important outcomes in multiple myeloma: A mixed‐methods study

Oliver Van Oekelen, Aris Liakos, Sofia Chissan, Evdoxia Hatjiharissi, M. Papaioannou, Maria Mainou, Panagiotis Malandrakis, Eirini Pagkalidou, Thomas Karagiannis, Evdokia Mandala, Evangelos Terpos, Ghulam Rehman Mohyuddin, Apostolos Tsapas, Efthymia Vlachaki
article en

Abstract

Research in multiple myeloma increasingly relies on surrogate end-points to expedite approvals, yet these may not reflect patient priorities. We conducted a mixed-methods study to identify outcomes valued by patients and clinicians and compare them with end-points used in randomized controlled trials (RCTs). Interviews with 10 patients and 6 clinicians identified treatment priorities, which, together with end-points from a systematic review of myeloma RCTs, informed tailored surveys, completed by 117 patients and 105 clinicians. Both groups ranked quality of life (QoL) as most important (odds ratio [OR] 1.01; 95% confidence interval [CI] 0.55-1.87). Clinicians more often prioritized overall survival (OS) (OR 1.92; 95% CI 1.05-3.50) and progression-free survival (PFS) (OR 5.37; 95% CI 1.95-14.79), whereas patients prioritized pain reduction (OR 0.03; 95% CI 0.00-0.23). Compared with RCT end-points, patients emphasized QoL (OR 0.03; 95% CI 0.01-0.07) and pain elimination (OR 0.05; 95% CI 0.02-0.11), while trials favoured PFS (OR 6.33; 95% CI 2.53-15.83) and response (OR 17.75; 95% CI 5.56-56.61). Clinicians aligned with trials on PFS but valued QoL and OS more highly. QoL emerged as a shared priority, underscoring the need for patient-centred trial designs that better capture outcomes meaningful to those living with myeloma.

British Journal of Haematology
National and Kapodistrian University of Athens (GR), Aristotle University of Thessaloniki (GR), AHEPA University Hospital (GR), Huntsman Cancer Institute (US), University of Oxford (GB), Ippokrateio General Hospital of Thessaloniki (GR), Manchester College (GB), Hippocration General Hospital (GR), Icahn School of Medicine at Mount Sinai (US)
Openalex Percentile: Top 40%
Multiple Myeloma Research and Treatments
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