Quantifying patient priorities: Identifying and weighing key non-clinical factors for scalp cooling decision-making in chemotherapy-induced alopecia prevention

BACKGROUND : Chemotherapy-Induced Alopecia (CIA)is consistently ranked as one of the most psychologically distressing sideeffects of cancer treatment. Scalp cooling (SC), or cold capping, remains theonly primary preventative strategy, yet its use demands a significantcommitment from the patient: added time at infusion appointments, potentialacute discomfort, and often substantial out-of-pocket financial cost. While research exists on the clinical efficacy of SC devices and protocols(i.e., what works), there is a critical and unmet need for research focused onpatient values and decisional science (i.e., what matters). Currently, patientslack standardized tools to systematically weigh these complex clinical andnon-clinical trade-offs against their personal priorities, often leading toreliance on anecdotal information and subsequent high rates of decisionalregret when expectations are unmet. The absence of structured supportnecessitates reliance on peer groups, such as the Chemotherapy Cold Cappersnetwork. The immediate aim of this study, titled The VALUED Study, is to pilota quantitative approach to identify and prioritize the specificpatient-determined factors (including clinical efficacy expectation,psychosocial impact, financial cost, and practical time commitment) that exertthe greatest influence on a patient's decision to utilize scalp cooling duringchemotherapy. METHODS : This ongoing project utilizes across-sectional, mixed-methods online survey designed to capture a targetedsnapshot of the trade-offs individuals make regarding hair preservation. Thisinitial data collection phase leveraged an existing patient advocacynetwork. The survey was distributed electronically across a target populationof individuals with a history of cancer who considered or used scalpcooling. Data from this interim analysis, including ranking andweighting scores, were analyzed descriptively toestablish preliminary factor prioritization of logistics,utility, and experience. Qualitative data from open responses werereviewed using rapid thematic analysis to enrich the context of thequantitative findings. CONCLUSION : These preliminary findings representthe foundational data regarding quantified, patient-determined decisionalpriorities currently absent from supportive care literature.The pilot data fromthis ongoing study provides an opportunity for clinicians, patient advocates,and supportive care networks to gain initial, evidence-based insight intowhat truly drives patient decisions, offering a path toward more robust shareddecision-making and reduced decisional regret.