Understanding what patients and caregivers value most in cancer treatment is increasingly essential for delivering personalized and patient-centered care, particularly in the context of high-cost, long-term oral targeted therapies such as ALK inhibitors for non–small cell lung cancer (NSCLC). At the 2025 American Society of Clinical Oncology (ASCO) Annual Meeting in Chicago, Illinois, Christopher Danes, PhD, scientific director of Global Medical Affairs Oncology at Takeda in Boston, Massachusetts, presented findings from a discrete choice experiment that explored the trade-offs patients with ALK-positive (ALK+) NSCLC and their caregivers are willing to make when evaluating treatment options.
In this interview with Pharmacy Times®, Danes discusses how the study’s insights can inform pharmacist-led shared decision-making, improve adherence strategies, and support value-based care planning by highlighting the nuanced preferences that shape treatment decisions in real-world oncology practice.
Pharmacy Times: How might the findings from this discrete choice experiment inform shared decision-making in pharmacy practice, particularly in patient counseling for ALK+ NSCLC treatments?
Christopher Danes, PhD: Our findings highlight that both patients and caregivers place the greatest value on maximizing 3-year progression-free survival (PFS) but are also willing to make trade-offs for reduced risk of certain adverse events (AEs) when considering potential treatment options for ALK+ NSCLC. The results shed light on the differences in treatment preferences between these groups and underscore the importance of engaging both patients and caregivers in open, individualized conversations about what matters most to them. Pharmacists should use this evidence to frame discussions with patients and caregivers, helping them understand the clinical benefits and potential risks of treatment and guiding shared decision-making that aligns with their preferences.
Pharmacy Times: The study showed that both patients and caregivers prioritized 3-year PFS but were also willing to trade some PFS to reduce certain risks. How should pharmacists help navigate those trade-offs during clinical consults?
Danes: Our data suggest that while most value PFS highly, many are open to trading some PFS for improvements in quality of life. Pharmacists can use these insights to tailor counseling, ensuring discussions about treatment options explicitly address both efficacy and AE profiles and helping support patients and caregivers in making choices that reflect their unique priorities. This is especially important for people living with ALK+ NSCLC, who are often still working or caring for children and may be on therapy for extended periods of time.
As a next step, we will be conducting additional analyses to gain clarity on distinct populations, including how they value tradeoffs and how preferences differ from group to group.
Pharmacy Times: Which specific AEs had the greatest impact on patient vs caregiver willingness to trade PFS, and how might that influence supportive care strategies?
Danes: According to our results from the full population of participants, both patients and caregivers were most willing to trade PFS to reduce the risk of any grade cognitive/mood effects, grade III or higher abnormal lab results, and grade III or higher lung complications. Interestingly, patients, but not caregivers, also valued reducing grade III or higher weight gain and any grade myalgia. This suggests supportive care strategies should prioritize early identification and management of cognitive/mood disturbances and serious lab or lung complications.
Notably, there were sub-populations of both patients and caregivers that were willing to accept any burden of AEs for improved efficacy, however, there were similar sized sub-populations of patients and caregivers that preferred a more balanced clinical profile. We are conducting further analyses on these populations to better understand what drives these preferences, which we hope to share in the future.
Pharmacy Times: Did the preferences differ significantly between patients with and without brain metastases? How might this subgroup variation affect treatment selection discussions?
Danes: We did evaluate the difference in attribute values in patients with or without brain metastases. Patients with brain metastases were willing to trade 3-year PFS more than others, which was interesting. We are doing further evaluation to assess why this might be and hope to share insights in the future.
Pharmacy Times: What role do you see pharmacists playing in eliciting and documenting patient and caregiver treatment preferences, especially in oral targeted therapy regimens such as ALK inhibitors?
Danes: Pharmacists are essential in eliciting, documenting, and communicating patient and caregiver preferences—particularly for oral ALK inhibitors that require ongoing adherence and monitoring. By routinely asking about patient goals, prior experiences with AEs, and personal values, pharmacists can ensure these preferences are incorporated into the care plan and communicated to the broader care team.
Pharmacy Times: Were there any surprises in the data about what risks patients and caregivers were most willing—or unwilling—to accept in exchange for longer PFS?
Danes: The importance of abnormal laboratory values was surprising, as it often can have little clinical manifestation. We investigated a little more and realized that patients and caregivers were concerned that abnormal laboratory values would lead to dose modifications, which in turn, could affect efficacy. This can induce anxiety for both patients and caregivers and underscores the importance of setting expectations for patients and caregivers at the onset of treatment.
In addition, there were a few differences between how patients and caregivers weighed certain attributes that we found interesting. For example, there was a subset of caregivers who were unwilling to trade any PFS for reduced toxicity, reflecting a strong focus on extending the life of their loved one regardless of AEs. Additionally, while patients were willing to trade a reduction in PFS to reduce risk of grade III or higher weight gain or any grade myalgia, caregivers were not. This makes sense when you think about it from the individual perspectives—significant weight gain and muscle soreness could have a significant impact on a patient’s daily life and self-esteem but may be viewed as only minor concerns by their caregivers, who would rather prioritize extending PFS. These nuances reinforce the importance of individualized discussions with both parties when making treatment decisions.
Pharmacy Times: Given that a subset of caregivers were unwilling to trade any PFS for reduced toxicity, how can pharmacists mediate potential differences in priorities between patients and their caregivers?
Danes: In partnership with health care providers, pharmacists can help serve as neutral facilitators, ensuring both patient and caregiver perspectives are heard. By providing balanced, evidence-based information and encouraging open dialogue, pharmacists can help identify shared goals or clarify areas of divergence, supporting consensus-building or compromise when needed.
Pharmacy Times: How can pharmacy teams use tools like discrete choice experiments to better tailor education and adherence support for long-term users of ALK inhibitors?
Danes: Discrete choice experiments can help us provide actionable insights into what patients and caregivers value most when evaluating potential treatment options. A discrete approach also allows you to avoid potential biases surrounding available treatment options by focusing on attributes vs brand names. Pharmacy teams can use these findings to proactively address the AEs that matter most to patients, personalize education materials, and design adherence interventions that reflect patient concerns and priorities.
Pharmacy Times: The study included patients recruited through an advocacy group—do you think these findings are generalizable to broader populations, and how might that influence pharmacist interpretation of these data?
Danes: While recruiting through an advocacy group may introduce some selection bias, our sample included a range of patients and caregivers representative of the ALK+ NSCLC community. However, pharmacists should interpret the findings with some caution, recognizing that preferences may vary in broader or more diverse populations and should always individualize discussions.
Pharmacy Times: How do these preference data inform value-based decision-making for specialty pharmacy services or formulary management when dealing with high-cost ALK inhibitors?
Danes: Our results suggest that value in ALK+ NSCLC treatments goes beyond survival outcomes and should also account for quality of life and patient/caregiver preferences about AEs. Specialty pharmacy services and formulary decisions should consider these dimensions to ensure access to therapies that best align with what patients and caregivers value most.
