Background. Despite recent treatment advances, multiple myeloma (MM) remains incurable, and patients with MM and their providers must choose from a wide range of available therapeutic options. Previous research suggests that cancer patients with higher levels of engagement have better outcomes and better satisfaction with their care. However, levels of engagement vary among patients with MM as has been observed in other malignancies. All4Cure has created a knowledge-sharing platform that seeks to engage patients, clinicians, and researchers in the care of patients with MM. This report summarizes baseline findings from a study that examines patient activation over time among patients enrolled to the All4Cure platform.

Materials and Methods. The 13-item Patient Activation Measure (PAM-13; score range 0 - 100) was used to assess patients' willingness and ability to take independent actions to manage their health. A set of 36 items from the Patient Reported Outcomes Common Terminology Criteria for Adverse Events (PRO-CTCAE) were used to assess patients' experience of symptoms.A Baseline patient survey assessed expectations for participation in the All4Cure platform.

Once patients enroll to the platform, All4Cure accesses their medical records from all institutions at which they have received care, and creates a customized patient dashboard that provides a de-identified visualization of all treatments and responses, from diagnosis to present. Running lab values and PROs can be overlaid to view change in those measures over time. Patients (and their enrolled providers) can review the dashboard, post questions, and interact with All4Cure staff or other providers.

Results. 120 (of a planned 200) patients have enrolled to date. Mean age was 68.88 (± 9.34), 73.3% were White (15% missing, 11.7% other race/ethnicity); 56.7% were male and 43.3% were female. Just over half (54.2%) had Kappa light chain disease, and 47.5% were IgG heavy chain. ISS stage distribution was stage I: 31.7%; stage II: 23.3%; stage III: 21.7%; with 23.3% unknown/not reported. Eighty percent had at least some college, 17.5% had a high school diploma or less, and 2.5% had missing educational status. The mean PAM-13 total score was 62.3 ± 13.5, with 7.5% of patients disengaged and overwhelmed at baseline (Level 1), 26.6% were becoming aware, but still struggling to control their treatment (Level 2), 54.8% taking actions and building their self-management skills (Level 3), and 22.5% were highly active in managing their health. Areas of concern for a small subset of patients were not knowing what their medications do (11.7%), not knowing what treatment options were available for them (12.3%), and lack of confidence in being able to work out solutions when new problems arise with their health (22.5%).

PAM-13 total scores differed significantly between patients with kappa light chain myeloma and those with lambda light chain myeloma, with mean scores of 64.4 and 57.1, respectively (p=0.003). However, PAM-13 scores were not significantly related to age, gender, heavy chain type, ISS stage, race, and education was found (p > 0.05).

There was a significant negative correlation between the PAM-13 and both PRO-CTCAE total score (r = -0.262, p=0.004) and several PRO-CTCAE item scores. Among the most significant of these were PAM-13 correlations PRO-CTCAE pain frequency (r= -0.319, p<0.001), severity (r= -0.219, p=0.018) and lifestyle interference (r= -0.205, p=0.027); frequency (r= -0.240, p=0.009) and severity (r= -0.216, p=0.019) of feeling that nothing can cheer the patient up; palpitation frequency (r= -0.220, p=0.017); and sadness frequency (r= -0.216, p=0.019) and severity (r= -0.210, p=0.023). Additionally, there was a significant positive correlation between the PAM-13 total score and baseline patient survey total score (r=0.391, p<0.001).

Conclusions. Patients with MM who enrolled onto the All4Cure platform have moderate activation on average at baseline, but vary in their willingness and ability to take action to manage their health. Lower patient activation was related to worse physical and mental symptom burden at baseline, and higher patient activation was related to positive expectations regarding their participation in All4Cure.

Disclosures

Blau:Exigent Research, LLC: Current Employment, Membership on an entity's Board of Directors or advisory committees; BillionToOne: Membership on an entity's Board of Directors or advisory committees; Janssen Global Services, LLC: Consultancy; ONCare Alliance, LLC: Current Employment, Membership on an entity's Board of Directors or advisory committees; Northwest Medical Specialties, PLLC: Current Employment.

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2024
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