[COMB2014]鼓励患者直面乳腺癌遗传咨询——Wong Seng Weng教授访谈

作者:  黄醒荣   日期:2014/8/26 18:43:55  浏览量:64741

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编者按:“第二届乳腺癌个体化治疗大会”于8月1~3日在北京顺利召开。会上,来自新加坡的Wong Seng Weng教授作了精彩演讲。Wong Seng Weng是伊丽莎白医疗癌症中心肿瘤学专家及内科主任顾问,擅长成人肿瘤的诊断与治疗,尤其在乳腺肿瘤、肺部肿瘤以及胃肠道肿瘤上有着自己独到的见解。《肿瘤瞭望》就乳腺的诊疗进展、遗传咨询和脑转移等问题采访了Wong教授。

  <Oncology Frontier>: You have published a paper entitled, “Acceptance, motivators and barriers in attending breast cancer genetic counseling in Asians.” Can you tell us some more about that?

  《肿瘤瞭望》:您发表了一篇题为“亚洲乳腺癌遗传咨询的接受性、倡导者和障碍”的文章,请您为我们介绍下这篇文章。

  Dr Wong: We know that 5-10% of breast cancers are potentially hereditary forms of breast cancer. Genetic assessment counseling is very important because it will guide management for the patient and also preventive measures for the future. It also guides what we need to do for close relatives, especially the first degree relatives. The difficulty is that in Asian patients, the acceptance is a lot less than in the West. In Western populations, the quest for knowledge and the desire to know is a lot stronger. This is the reason why, based on our observations, there is some resistance amongst Eastern populations towards this counseling.We want to be able to identify how big the problem is and what barriers need to be overcome. I am glad to say that of the almost 500 patients that we interviewed, the acceptance rate was reasonable – 70% of patients were actually open to the idea of being counseled and being assessed. We also wanted to clarify which were the factors that motivated Asian patients so we can encourage more patients to come on board. We also wanted to know what are the barriers so we can try to overcome those barriers and, again, promote greater acceptance. What we have noticed is that educational background is very important. Patients who are better educated and patients who are comfortable with the English language thus allowing them to access a lot more information are much more receptive. Another motivating factor is encouragement from doctors. I think oncologists and doctors should take a bit of time to actually discuss this topic even in a busy clinical practice.From our interviews we realized that the explanation and encouragement from the oncologist was a major motivating factor. Another motivating factor is the desire to know about the problem, prevention and early detection for their own benefit.

  Some patients are also motivated by what they feel they can do for their close relatives if they know they might be similarly affected and they can communicate this to their relatives. The motivation can also be to benefit and look after close family members. So what are the barriers? One of the barriers is fear of knowing. Unfortunately, many patients in Asia have an ‘ostrich’ mentality when it comes to a serious problem, and the fear of receiving bad news means they would rather not know. Another factor is the perception that it is too complicated and they won’t be able to understand an explanation. Perhaps patients underestimate others ability to understand. When we make an effort, this concept is actually not difficult for any person to grasp.We have to tell them to step back from this phobia of the disease. There is sometimes the idea that with a genetic problem it is impossible to change because it is inherited and you can’t change a genetic profile - they feel there is no need to know because there is no benefit in knowing.  We have to dispel that myth because it is not true. There are a lot of preventive measures for the occurrence of future disease and different ways of screening for disease that we would recommend to patients who have inherited the cancer genes so patients themselves can benefit from this knowledge. The fact that they think nothing can be done is a misconception that we need to dispel.

  Wong教授:我们知道5~10%的乳腺癌可能具有遗传性。遗传咨询非常重要,原因在于它可为患者的治疗提供指导,此外它也是未来的预防手段。遗传咨询还可指导我们对患者的近亲提供帮助,尤其对于直系亲属。但目前的问题是,亚洲乳腺癌患者对于遗传咨询的接受程度远低于西方人群。西方人群对知识的需求和寻求知识的热情更加强烈。根据我们的观察,这也是西方人群对遗传咨询抵触性较小的原因。

  希望能明确这一问题究竟有多严重以及需要克服哪些障碍。令我感到振奋的是在近500例接受访问的患者中,对遗传咨询持接受态度的患者数量处于理性范围,约70%的患者能够开明的对待遗传咨询并接受评估。我们还想了解哪些因素可以促使亚洲患者接受遗传咨询,这样有助于我们鼓励更多患者接受这一方式。

  此外,我们也需要知道有哪些障碍,这样才有机会克服障碍,从而提高患者对遗传咨询的接受程度。目前,我们已发现患者的教育背景具有重要作用。教育程度高的患者和掌握英语从而有机会获得更多信息的患者更能接受遗传咨询。来自医生的鼓励也是一个有利因素。我认为肿瘤专科医师和普通医师有必要在繁忙的临床工作中抽出一些时间和患者就遗传咨询问题进行一些实质性的讨论。 根据访问结果,我们认为肿瘤专科医师就遗传咨询进行的解释和鼓励是主要的促进因素。另一个有利因素是患者的意愿,她们迫切希望了解这一问题、如何预防以及为了她们自己的切身利益而早期发现病变。一些患者得知她们的近亲也可能罹患同样的疾病时,,会考虑接受遗传咨询。。这些促进因素是有利的并可惠及患者的近亲。

  哪些是阻碍因素?其中之一是害怕知道真相。不幸的是不少亚洲患者在遇到严重问题的时候都有“鸵鸟心理”,她们宁愿不知道也不愿意接受坏消息。另一个因素是这些问题太复杂她们难以理解或无法对其进行解释。如果我们努力,遗传咨询这一观念实际上并不难以理解。我们必须告诉她们不要恐惧疾病。有人会对基因问题持有这样的观点:既然基因疾病具有遗传性,而我们自己又无法改变自己的基因类型,所以没有必要了解这一问题,毕竟知道了也没有好处。显然这种想法是错误的。我们有很多预防未来出现乳腺癌的方法以及筛查方法,我们应当将这些方法推荐给携带肿瘤基因的患者,这样,她们在了解相关知识后可从中获益。患者认为自己无法改变现状的想法是需要我们去打破的误区。

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