肿瘤治疗方案的患者决策辅助工具，可以让患者了解不同治疗方案对复发率和/或生存获益以及副作用和/或负担的影响。不过，关于复发/死亡和副作用发生率的统计值均为具体数字，通常存在极大不确定性，例如复发率10%，患者通常理解为自己的复发概率是10%，其实复发率是指全部患者的复发比例，有些患者可能根本不复发，有些患者可能复发甚至死亡，故医患沟通方法不容忽视。如何沟通这些不确定性的理想方法仍然缺乏证据。
2020年4月13日，欧洲乳腺癌专科医师学会《乳腺》在线发表荷兰马斯特里赫特大学、荷兰癌症研究所、列文虎克医院、雷尼尔·格拉夫医院、莱顿大学、奈梅亨大学、迪温特放疗协作组、阿纳姆放疗协作组、阿姆斯特丹大学、乌得勒支大学、格罗宁根大学、鹿特丹大学的研究报告，开发了一种图示方法，将局部复发率不确定性纳入乳腺癌患者决策辅助工具，以帮助她们对放疗进行决策。
首先，该研究对患者和医务人员进行定性访谈。随后的开发阶段，该研究组织4位患者和12位医务人员尽可能详细地通过口头言语让她们把解决问题的思考过程全部表达出来。
结果，通过图示，患者对局部复发率的各种不确定性取得共识，她们自己的医师结合文字说明，可以进一步提供更精确的个人风险。
风险图示由10行×10列共计100个女性图标组成，将颜色逐步渐变的图标表示为不确定范围。通过文字标注解释可能出现副作用的发生率和严重性。
因此，该研究针对患者决策辅助工具，开发了该直观的复发率不确定性图示新方法，并于2017年10月1日～2020年7月30日开展BRASA研究对该风险不确定性沟通方法效果进行检验。
BRASA: Implementing a Decision Aid for Breast Cancer and DCIS Patients Deciding on Their Radiation Treatment: A Pre- and Post-intervention Study (NCT03375801)
Breast. 2020 Apr 13;51:105-113. [Epub ahead of print]
Risk communication in a patient decision aid for radiotherapy in breast cancer: How to deal with uncertainty?
D.B. Raphael, N.S. Russell, J.M. Immink, P.G. Westhoff, M.C. Stenfert Kroese, M.R. Stam, L.M. van Maurik, H.J.G.D. van den Bongard, J.H. Maduro, M.G.A. Sattler, T. van der Weijden, L.J. Boersma.
Maastricht University, Maastricht, the Netherlands; Netherlands Cancer Institute, Antoni van Leeuwenhoek, Amsterdam, the Netherlands; Reinier de Graaf Hospital, Delft, the Netherlands; Leiden University Medical Center, Leiden, the Netherlands; Radboud University Medical Center, Nijmegen, the Netherlands; Radiotherapy Group, Deventer, the Netherlands; Radiotherapy Group, Arnhem, the Netherlands; Amsterdam University Medical Centers, the Netherlands; University Medical Center, Utrecht, the Netherlands; University Medical Center Groningen, Groningen, the Netherlands; Erasmus MC Cancer Institute, Rotterdam, the Netherlands.
HIGHLIGHTS
There exists uncertainty around local recurrence risks for breast cancer patients.
Little is known on how to communicate uncertainty to patients.
Patient decision aids can help communicating risks and uncertainty.
We developed pictographs to communicate numerical uncertainty in recurrence risks.
The effect of the pictographs is currently being tested in the BRASA study.
BACKGROUND AND AIM: Patient decision aids for oncological treatment options, provide information on the effect on recurrence rates and/or survival benefit, and on side-effects and/or burden of different treatment options. However, often uncertainty exists around the probability estimates for recurrence/survival and side-effects which is too relevant to be ignored. Evidence is lacking on the best way to communicate these uncertainties. The aim of this study is to develop a method to incorporate uncertainties in a patient decision aid for breast cancer patients to support their decision on radiotherapy.
METHODS: Firstly, qualitative interviews were held with patients and health care professionals. Secondly, in the development phase, thinking aloud sessions were organized with four patients and 12 health care professionals, individual and group-wise.
RESULTS: Consensus was reached on a pictograph illustrating the whole range of uncertainty for local recurrence risks, in combination with textual explanation that a more exact personalized risk would be given by their own physician. The pictograph consisted of 100 female icons in a 10 x 10 array. Icons with a stepwise gradient color indicated the uncertainty margin. The prevalence and severity of possible side-effects were explained using verbal labels.
CONCLUSIONS: We developed a novel way of visualizing uncertainties in recurrence rates in a patient decision aid. The effect of this way of communicating risk uncertainty is currently being tested in the BRASA study (NCT03375801).
KEYWORDS: Radiotherapy, Decision aid, Risk communication, Numerical uncertainty
DOI: 10.1016/j.breast.2020.04.001
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