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.
Authors
- Oliver Van Oekelen (ORCID: https://orcid.org/0000-0002-5824-197X)
- Aris Liakos (ORCID: https://orcid.org/0000-0003-3261-2979)
- Sofia Chissan
- Evdoxia Hatjiharissi (ORCID: https://orcid.org/0000-0002-8233-0542)
- M. Papaioannou
- Maria Mainou (ORCID: https://orcid.org/0000-0002-5775-2241)
- Panagiotis Malandrakis (ORCID: https://orcid.org/0000-0002-4673-171X)
- Eirini Pagkalidou (ORCID: https://orcid.org/0000-0002-8655-7293)
- Thomas Karagiannis (ORCID: https://orcid.org/0000-0001-5242-0574)
- Evdokia Mandala
- Evangelos Terpos
- Ghulam Rehman Mohyuddin
- Apostolos Tsapas
- Efthymia Vlachaki
Institutions
- 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)
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
- 0.00