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Smoldering multiple myeloma: a multi-country mixed-methods study on disease perceptions and patient treatment preferences

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To understand disease perceptions and treatment preferences of patients with high-risk smoldering multiple myeloma (HR-SMM) or multiple myeloma (MM) that recently progressed from HR-SMM, and to estimate the minimum progression-free survival (min-PFS) required to accept the treatment burden. This mixed-methods study interviewed 50 patients (HR-SMM and MM 1:1) from the USA, France, Italy, and Spain. Qualitative semi-structured interviews explored symptoms, quality of life, and awareness and expectations of SMM treatments. A quantitative thresholding exercise elicited the min-PFS for patients to accept a hypothetical treatment. Results were reported for HR-SMM and MM. The most common symptoms were fatigue (68%) and pain (56%); 20% were asymptomatic. Most treatment-naïve patients (n = 31/44) accepted physician recommendations that treatment was not needed, burdensome, or not available. Twenty-three patients (61%) were willing to start treatment while having HR-SMM. Patients expected treatments to delay disease progression (30%) or increase life expectancy (24%), whereas 22% expected to be “cured” if treated. The min-PFS for the given treatment was 60 months; 61 and 59 months for HR-SMM and MM, respectively. Considerable psychological, physical, and functional burdens were imposed on HR-SMM patients by potential disease progression. Most patients were willing to receive treatment to delay progression and reduce symptomatic burden.

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