PO.ADV02 · 患者倡导
量化患者优先事项：识别并权衡化疗所致脱发预防中头皮冷疗决策的关键非临床因素
Quantifying patient priorities: Identifying and weighing key non-clinical factors for scalp cooling decision-making in chemotherapy-induced alopecia prevention
作者与单位 Authors & Affiliations
摘要 Abstract
中文摘要
背景：化疗所致脱发（Chemotherapy-Induced Alopecia，CIA）一直被列为癌症治疗中在心理上最令人痛苦的副作用之一。头皮冷疗（Scalp cooling，SC），即冷帽疗法，仍是唯一的一级预防策略，然而其使用要求患者作出重大付出：输注就诊时间延长、可能出现急性不适，以及往往相当可观的自付经济成本。
虽然已有关于SC设备和方案临床疗效（即什么有效）的研究，但在聚焦患者价值观和决策科学（即什么重要）的研究方面仍存在关键且未被满足的需求。目前，患者缺乏标准化工具来系统地根据其个人优先事项权衡这些复杂的临床与非临床取舍，往往导致依赖轶事性信息，并在期望未能实现时产生高比例的决策后悔。缺乏结构化支持使患者不得不依赖同伴群体，例如Chemotherapy Cold Cappers网络。
本研究名为VALUED Study，其近期目标是试行一种定量方法，以识别并优先排序对患者决定在化疗期间是否使用头皮冷疗影响最大的、由患者确定的具体因素（包括临床疗效期望、社会心理影响、经济成本和实际时间投入）。
方法：这一进行中的项目采用横断面、混合方法的在线调查，旨在捕捉个体在头发保护方面所作取舍的定向快照。这一初始数据收集阶段利用了一个现有的患者倡导网络。该调查以电子方式分发给目标人群，即曾考虑或使用过头皮冷疗、有癌症病史的个体。本中期分析的数据（包括排序和权重评分）经描述性分析，以初步确定后勤、效用和体验方面的因素优先级。开放式回答中的定性数据采用快速主题分析法进行审阅，以丰富定量结果的背景。
结论：这些初步结果代表了关于量化的、由患者确定的决策优先事项的基础性数据，而此类数据目前在支持性照护文献中尚付阙如。这一进行中研究的试点数据为临床医生、患者倡导者和支持性照护网络提供了机会，使其能够初步获得基于证据的洞见，了解真正驱动患者决策的因素，从而为更稳健的共享决策和减少决策后悔提供路径。
查看英文原文 English abstract
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.