OBJECTIVES: Value assessment frameworks (VAFs) have been developed by several organizations to guide decision making about oncology treatments. The goal of such frameworks is to objectively delineate the value of treatments by weighing the financial cost of treatment compared to clinical outcomes such as toxicity, survival and/or clinical benefit, and symptom palliation. VAFs may fall short of being patient-centered as there has been little patient engagement in their development. This study explored oncology patients' and family caregivers' perspectives of VAFs.

METHODS: A qualitative inquiry using semi-structured interviews with patients and family caregivers from three provinces in Canada occurred from November 2021 to August 2023. Interpretive description was used to iteratively analyze transcribed data.

RESULTS: Sixty participants were interviewed. There were slightly more females (n=37), more patients (n=45) than caregivers, the mean age was 55 years (range 18-80), and a variety of tumor types and treatment trajectories were included. Two main themes emerged including 1) Patients’ values are highly personal and contextual, and 2) VAFs fall short of supporting shared decision-making at the patient-physician level. Patients and caregivers’ unique personal circumstances (goals, preferences, comorbid illness, social support, past experience with treatment, disease status) inform their definition of value of treatment, which changes throughout the trajectory of illness. Participants viewed VAFs as a starting point for shared decision-making conversations, emphasizing the need for fulsome conversation about toxicity and survival. In addition, positive communication (being heard, developing trust), and acknowledging personal values, choice and autonomy, were perceived necessary to achieve optimal shared decision-making.

CONCLUSIONS: Oncology VAFs lack important elements of value as highlighted by our study participants. VAFs can be a prompt to tailor shared decision-making discussions and help determine patient priorities, which should be reassessed throughout the treatment and survivorship trajectory. To ensure more patient-centered VAFs in oncology, future revisions should include rigorous patient engagement processes.