Huijgens Fiorella L, Hillen Marij A, Huisinga Mette J, Vis André N, Tillier Corinne N, Oldenburg Hester S A, Diepenhorst Gwen M P, Henselmans Inge
Department of Medical Psychology, Amsterdam UMC, Amsterdam, Netherlands.
Amsterdam Public Health, Quality of Care, Amsterdam, the Netherlands.
Med Decis Making. 2025 Jul;45(5):533-544. doi: 10.1177/0272989X251334979. Epub 2025 Apr 29.
PurposePatients are increasingly involved in decision making by their clinicians. Yet, there are concerns that involvement in decision making may cause emotional distress in patients. Little research has examined the nature of the burden experienced by patients confronted with a life-changing treatment decision. Therefore, we explored the nature and manifestations of burden experienced by patients with early-stage breast and prostate cancer regarding their involvement in decision making. We further aimed to identify patient-perceived causes and potential solutions for their experienced burden.MethodsWe used semi-structured interviews to explore the perspectives of patients with early-stage breast and prostate cancer. Patients ( = 24) were eligible if they were diagnosed in the past 6 mo and reported some degree of burden regarding their involvement in decision making. Two researchers independently inductively coded the interviews using thematic analysis.ResultsPatients described being burdened by the decision in various ways and at various moments in the decision-making process. Patients attributed their decision-related burden mainly to uncertainty, fear of making the wrong decision, insufficient guidance by their clinician, and feeling an overwhelming sense of responsibility for their treatment decision. Patients indicated various factors that mitigated their burden or facilitated decision making, including having sufficient time, the opportunity to discuss the choice with experts and/or family, and receiving advice or confirmation from family or the clinician.ConclusionThese findings suggest that decision-related burden could be caused by the uncertainty and anxiety patients experience and by a nonpreferred division of roles within the decision-making process.ImplicationsAccordingly, acknowledging patients' feelings by discussing the presence of uncertainty and distress might normalize the burden for patients. Moreover, clinicians could explore and adjust to patients' role preference in decision making and discuss what would facilitate the decision process for patients.HighlightsPatients experience emotional, cognitive, and physical burden from their involvement in decision making.Some of the burden appears to result from the way clinicians involve patients in decision making.In addition to information about options, benefits, and harms, patients require active support in their decision-making process.Clinicians could aim to avoid overfocus on patient autonomy and instead establish authentic, shared decisions, with a role for some clinician control if needed.
目的
患者越来越多地参与临床医生的决策过程。然而，有人担心参与决策可能会给患者带来情绪困扰。很少有研究探讨面临改变生活的治疗决策的患者所承受负担的本质。因此，我们探讨了早期乳腺癌和前列腺癌患者在参与决策方面所承受负担的本质和表现。我们还旨在确定患者认为的造成其负担的原因以及潜在的解决方案。
方法
我们采用半结构式访谈来探究早期乳腺癌和前列腺癌患者的观点。如果患者在过去6个月内被诊断出患有疾病，并且表示在参与决策方面有一定程度的负担，那么他们（n = 24）就符合条件。两名研究人员使用主题分析法对访谈进行独立的归纳编码。
结果
患者描述了在决策过程的不同阶段以各种方式承受决策负担。患者将与决策相关的负担主要归因于不确定性、害怕做出错误决策、临床医生指导不足以及对治疗决策感到责任重大。患者指出了减轻其负担或促进决策的各种因素，包括有足够的时间、有机会与专家和/或家人讨论选择，以及得到家人或临床医生的建议或确认。
结论
这些发现表明，与决策相关的负担可能是由患者经历的不确定性和焦虑以及决策过程中角色分配不理想所导致的。
启示
因此，通过讨论不确定性和困扰的存在来承认患者的感受，可能会使患者的负担正常化。此外，临床医生可以探索并适应患者在决策中的角色偏好，并讨论哪些因素会促进患者的决策过程。
要点
患者因参与决策而经历情绪、认知和身体负担。
部分负担似乎源于临床医生让患者参与决策的方式。
除了关于选择、益处和危害的信息外，患者在决策过程中还需要积极的支持。
临床医生可以避免过度关注患者自主权，而是建立真实的、共同的决策，如果需要，临床医生可发挥一定的控制作用。
