Background: Multiple myeloma patients face complex barriers to diagnosis, care access, support,

and navigation. This study analyzes patient-reported experiences to identify structural gaps and

cluster patients into meaningful segments based on their needs and perceptions.

Methods: We administered a 48-item anonymous survey to adult myeloma patients at the Medical

College of Wisconsin and through national platforms, including the International Myeloma

Foundation, Leukemia & Lymphoma Society, and Facebook groups. The survey assessed

demographics, treatment experiences, delays, perceived personalization, and barriers to care. We

used JMP 17 for analysis and Julius.AI for visualization. Rule based segmentation of structured

responses was used to identify distinct patient personas. Chi-square tests assessed associations,

with p < 0.05 considered significant. The study was IRB-approved.

Results : A total of 320 participants responded between April 25 and June 5, 2025; 289 (90.3%)

completed the survey in full. The cohort was predominantly older (55.7%, n=170/305 between 60-

75), White (79.3%, n=241/304), female (58.9%, n=179/304), highly educated (89.5%, n=272/304),

and suburban (52.5%, n=159/303). Modal insurance types were Medicare (37.8%) or private

insurance (30.9%); 11.2% both. Most (69.7%) reported a smooth treatment start; delays were

primarily due to insurance/cost (4%). Using rule-based segmentation of structured responses, we

identified three distinct patient personas: (1) Empowered but Unsupported (n=56; 17.5%) who

indicated no emotional support barriers, less interest in navigators, but frequent reports of unmet

needs such as poor communication. (2) Engaged and Informed (n=105; 32.8%): Highly motivated

patients who requested personalized care, clinical trial transparency, or insurance navigation and

(3) Delayed and Discouraged (n=35; 10.9%) who reported lower support, diagnostic delays, and a

strong perception of race-related disparities. Unclassifiable personas (n=124) were due to missing

or neutral responses

There was no difference in self identified race across the personas (p = 0.08), but 100% of the

Delayed/ Discouraged group believed race played a role in care, compared with 44% of the

Engaged/Informed and 21.4% of the Empowered/Unsupported (p < 0.001). Minoritized patients

(86.7% Black, 100% other minoritized) were more likely to perceive race as a factor (p = 0.0024).

Empowered/Unsupported patients were significantly more likely to request better communication

(100%) and empathy (53.6%), while Engaged and Informed patients prioritized clinical trial access

(61%). None of the Delayed and Discouraged patients made this request (p < 0.0001). Black

respondents most frequently expressed the need for greater empathy (53.7%; p = 0.0012). Those

<60 (40.2%, n=33) were more likely to express interest in clinical trials (p=0.03), this interest did not

vary by race (p=0.36). Interest in patient navigation did not significantly differ by education level (p =

0.3), suggesting that even highly educated patients may struggle with treatment complexity. Most

patients felt their care was personalized (71.1% 207/291), with no differences by race (p = 0.55), but

perceptions varied by persona with only 39.1% of Engaged/Informed patients felt their treatment

was always tailored, vs. 61.8% of Empowered/Unsupported and 88.6% of Delayed/Discouraged (p

< 0.0001), contrasting patients' expectations with the actual delivery of care.

Conclusion: Patient-reported experiences reveal distinct personas with differing needs,

perceptions and expectations of care. While most patients reported smooth treatment transitions

and felt their care was personalized, gaps persist particularly among highly engaged patients who

report unmet expectations around communication, personalization, and trial access. Perceptions

of racial disparities persist, especially among minoritized groups illuminating the unequal

experiences of patients within the myeloma care landscape. These findings stress the importance

of segmenting care approaches to align with patient identity, complexity, and support needs in

multiple myeloma.

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2025
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