腫瘤治療方案的患者決策輔助工具，可以讓患者了解不同治療方案對(duì)復(fù)發(fā)率和/或生存獲益以及副作用和/或負(fù)擔(dān)的影響。不過(guò)，關(guān)于復(fù)發(fā)/死亡和副作用發(fā)生率的統(tǒng)計(jì)值均為具體數(shù)字，通常存在極大不確定性，例如復(fù)發(fā)率10%，患者通常理解為自己的復(fù)發(fā)概率是10%，其實(shí)復(fù)發(fā)率是指全部患者的復(fù)發(fā)比例，有些患者可能根本不復(fù)發(fā)，有些患者可能復(fù)發(fā)甚至死亡，故醫(yī)患溝通方法不容忽視。如何溝通這些不確定性的理想方法仍然缺乏證據(jù)。
2020年4月13日，歐洲乳腺癌專(zhuān)科醫(yī)師學(xué)會(huì)《乳腺》在線發(fā)表荷蘭馬斯特里赫特大學(xué)、荷蘭癌癥研究所、列文虎克醫(yī)院、雷尼爾·格拉夫醫(yī)院、萊頓大學(xué)、奈梅亨大學(xué)、迪溫特放療協(xié)作組、阿納姆放療協(xié)作組、阿姆斯特丹大學(xué)、烏得勒支大學(xué)、格羅寧根大學(xué)、鹿特丹大學(xué)的研究報(bào)告，開(kāi)發(fā)了一種圖示方法，將局部復(fù)發(fā)率不確定性納入乳腺癌患者決策輔助工具，以幫助她們對(duì)放療進(jìn)行決策。
首先，該研究對(duì)患者和醫(yī)務(wù)人員進(jìn)行定性訪談。隨后的開(kāi)發(fā)階段，該研究組織4位患者和12位醫(yī)務(wù)人員盡可能詳細(xì)地通過(guò)口頭言語(yǔ)讓她們把解決問(wèn)題的思考過(guò)程全部表達(dá)出來(lái)。
結(jié)果，通過(guò)圖示，患者對(duì)局部復(fù)發(fā)率的各種不確定性取得共識(shí)，她們自己的醫(yī)師結(jié)合文字說(shuō)明，可以進(jìn)一步提供更精確的個(gè)人風(fēng)險(xiǎn)。
風(fēng)險(xiǎn)圖示由10行×10列共計(jì)100個(gè)女性圖標(biāo)組成，將顏色逐步漸變的圖標(biāo)表示為不確定范圍。通過(guò)文字標(biāo)注解釋可能出現(xiàn)副作用的發(fā)生率和嚴(yán)重性。
因此，該研究針對(duì)患者決策輔助工具，開(kāi)發(fā)了該直觀的復(fù)發(fā)率不確定性圖示新方法，并于2017年10月1日～2020年7月30日開(kāi)展BRASA研究對(duì)該風(fēng)險(xiǎn)不確定性溝通方法效果進(jìn)行檢驗(yàn)。
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
聯(lián)系客服
