OBJECTIVES: Newer immunotherapies, such as chimeric antigen receptor T-cell therapy (CAR-T) and T-cell engaging bispecific antibodies (BsAbs), offer innovative ways to treat hematological cancers (i.e., myeloma, leukemia, and lymphoma). While these novel immunotherapies offer promising survival outcomes, they are not without potentially serious side effects and impacts on Quality of Life (QoL). There are currently no specific Patient Reported Outcome Measures (PROMs) for reflecting these treatments. This research aimed to understand the challenges around implementing PROMs while patients receive novel immunotherapies. We sought to identify ways to encourage alignment, consistency, and interpretability of data collected using PROMs for novel immunotherapies.

METHODS: In March 2024, we held two two-hour virtual workshops with participants representing the myeloma, leukemia, and lymphoma patient communities, regulators, payers/ HTA bodies, industry, academic researchers, clinicians, and trialists.

RESULTS: Twenty-nine representatives participated across the online workshops. Key takeaways include: 1) PROMs in use today do not capture all symptoms and side effects important to patients and other stakeholders; 2) current measures do not sufficiently capture patients’ short-and long-term novel immunotherapy treatment experiences; 3) while there is no consensus regarding timing and frequency of long-term follow-up, workshop participants thought a reasonable approach to measuring long-term effects could include administering PROMs every 6 or 12 months during long-term follow-up, as well as an annual assessment of role and cognitive function.

CONCLUSIONS: PROMs currently used in studies about novel immunotherapies do not address all patient-important outcomes or treatment-related side effects, which can severely impact patients’ QoL. Current QoL assessment approaches do not address the unique attributes of novel immunotherapies. Assessments should be tailored to understand treatment experiences and patient outcomes. Collaboration between patients, clinicians, researchers, and industry representatives is essential to develop and refine PRO tools and accurately reflect real-world experiences of patients undergoing treatment with novel immunotherapies.