Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, 3333 California Street, Suite 265, San Francisco, CA, 94118, USA.
School of Sociology, Cancer Prevention and Control Group, University of Arizona, Tucson, AZ, USA.
Support Care Cancer. 2019 Mar;27(3):1059-1070. doi: 10.1007/s00520-018-4395-7. Epub 2018 Aug 22.
The treatment decisions of melanoma patients are poorly understood. Most research on cancer patient decision-making focuses on limited components of specific treatment decisions. This study aimed to holistically characterize late-stage melanoma patients' approaches to treatment decision-making in order to advance understanding of patient influences and supports.
(1) Exploratory analysis of longitudinal qualitative data to identify themes that characterize patient decision-making. (2) Pattern analysis of decision-making themes using an innovative method for visualizing qualitative data: a hierarchically-clustered heatmap. Participants were 13 advanced melanoma patients at a large academic medical center.
Exploratory analysis revealed eight themes. Heatmap analysis indicated two broad types of patient decision-makers. "Reliant outsiders" relied on providers for medical information, demonstrated low involvement in decision-making, showed a low or later-in-care interest in clinical trials, and expressed altruistic motives. "Active insiders" accessed substantial medical information and expertise in their networks, consulted with other doctors, showed early and substantial interest in trials, demonstrated high involvement in decision-making, and employed multiple decision-making strategies.
We identified and characterized two distinct approaches to decision-making among patients with late-stage melanoma. These differences spanned a wide range of factors (e.g., behaviors, resources, motivations). Enhanced understanding of patients as decision-makers and the factors that shape their decision-making may help providers to better support patient understanding, improve patient-provider communication, and support shared decision-making.
黑色素瘤患者的治疗决策了解甚少。大多数关于癌症患者决策的研究都集中在特定治疗决策的有限组成部分上。本研究旨在全面描述晚期黑色素瘤患者的治疗决策方法,以深入了解患者的影响因素和支持措施。
(1)对纵向定性数据进行探索性分析,以确定描述患者决策的主题。(2)使用一种创新的可视化定性数据的方法(层次聚类热图)对决策主题进行模式分析。参与者是一家大型学术医疗中心的 13 名晚期黑色素瘤患者。
探索性分析揭示了八个主题。热图分析表明有两种主要的患者决策者。“依赖型局外人”依赖提供者获取医学信息,表现出对决策的低参与度,对临床试验的兴趣较低或较晚,表达利他主义动机。“积极的局内人”在其网络中获取大量医学信息和专业知识,咨询其他医生,对试验表现出早期和实质性的兴趣,表现出高度的决策参与度,并采用多种决策策略。
我们在晚期黑色素瘤患者中确定并描述了两种截然不同的决策方法。这些差异涵盖了广泛的因素(例如,行为、资源、动机)。增强对患者作为决策者的理解以及影响他们决策的因素,可能有助于提供者更好地支持患者的理解,改善医患沟通,并支持共同决策。