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签下手术同意书前的脑内大战 | BMC Women's Health |
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论文标题:Using the Health Belief Model to explore why women decide for or against the removal of their ovaries to reduce their risk of developing cancer
期刊:BMC Womens Health
作者:Anne Herrmann, Alix Hall & Anthony Proietto
发表时间:2018/11/14
DOI:10.1186/s12905-018-0673-2
微信链接:https://mp.weixin.qq.com/s/54rdfH9d_WoT3Lg-_-bvqg
当面临着艰难的医疗抉择时,许多病人感到不堪重负,或不能够做出选择。最近在BMC Womens Health 上发表的一篇文章探索了女性在选择是否进行外科手术以降低卵巢癌风险时的决策过程。在接下来的分享中,这篇文章的作者以一位假设病人的视角,讨论了她在这一艰难选择时将面临的困境。
在漫长的人生中,我们总是会花费大量的精力来做出这样或那样的抉择。我们常常为以下的问题所烦恼:“我该申请这个新工作么?”,“我该买这辆车么?”或者“下个假期我们应该去哪里度假呢?”。
为了做出选择,我们经常花费很多时间来收集相关信息。我们会征询亲朋好友的意见,在夜里辗转难眠,权衡每个选择的利弊,最后才找到我们所要的选择。有趣的是,我们很多人却不会在涉及自身医疗健康的选择上花费相同的精力。
面对医疗服务提供者给出的相关信息,许多病人会感到心力交瘁。一些病人可能会表示得到的信息太少或太多,又或者提供给他们的信息并不适合他们自身的情况。虽然我们每天平均要做上百次的选择,但是,突然之间,面对自身医疗健康要做出的选择却变成了一件棘手的事情。
医患共同决策的兴起
在医疗机构中,越来越多的医疗决策变得“偏好敏感(preference-sensitive)”。它的意思是说从医疗角度上看不存在唯一的最佳选择。每个选择都有不同的利弊,而不同的患者可能有不同的偏好。
因此,有观点认为患者应当基于他们希望的程度,参与他们自身治疗方案的决策过程。例如,一直以来都有很多活动者在积极呼吁“任何关于我的事情,我都要参与(Nothing about me without me)”。在1998年的萨尔茨堡全球研讨会上,来自29个国家的代表就采纳了这一标语。该研讨会旨在探讨如何通过将患者纳入到医疗过程中来提高医疗服务的质量。全球已经有许多倡议来支持这个患者参与医疗决策过程的设想。世界各地的研究人员、患者代表和政策制定者们已经进行了数十年的努力来提升患者在医疗过程中的参与程度。然而,虽然已经做出了很多努力,但是研究人员们对于如何帮助病人对他们的治疗方案做出选择的最佳方式仍然存有争论。
美萍要面对的一个艰难的医疗选择……
为了更好地描绘这一情景,我想向大家介绍美萍的情况。美萍现在40岁,育有2个孩子。她的母亲死于卵巢癌。她的医生告诉她,她有较高的卵巢癌患病风险。因此,美萍被建议摘除健康的卵巢,以降低患癌症的风险。
美萍害怕卵巢癌的风险,因为她知道卵巢癌常常只在病程晚期才被发现,而且卵巢癌患者的存活率很低。她的母亲面对卵巢癌时的鲜活记忆让她更加害怕自己罹患癌症。
然而,虽然卵巢摘除手术有可能会降低她患癌症的风险,但是手术还伴随着许多副作用,包括手术并发症(如出血或感染),提早绝经及其带来的相关症状(如抑郁、焦虑、认知障碍风险、骨质疏松症或髋部骨折)。
此外,美萍也担心在摘除了卵巢之后自己还是不是一个真正的女人,或者说她的性生活是否会受影响。她担心手术的长期影响会影响她与丈夫的亲密关系。
那么,现在美萍应该要怎么做呢?她询问了自己的医生。医生给她看了许多事实案例和数据图表。但是,美萍才是那个需要最终决定是否进行手术的决策人。为此她感到不堪重负,希望在做出这个最终将会影响她生活与幸福的决定过程中得到更多的支持。
如何帮助像美萍这样的病人
我们采访了许多像美萍这样的女性。她们都面临着是否要摘除健康卵巢以降低患癌风险的选择。在最近发表的这篇论文中,我们详细描述了这些女性是如何做出决定的,以及做出某个决定的理由。我们使用了一个理论框架来指导我们的研究,并就如何更好地帮助女性做出艰难的医疗决策提出了建议。
我们还研究了女性如何利用不同的策略(如统计信息、直觉和自身经验)来判断哪个选择更为有利。我们探讨了她们最纠结的问题,以及如何改善这方面的医患沟通。这篇文章能帮助我们理解患者们为何以及如何对她们的医疗方案进行决策,从而为帮助像美萍这样的患者处理医疗决策的“棘手问题”迈出了重要一步。
摘要:
Background
Women at an increased risk of ovarian cancer often have to decide for or against the surgical removal of their healthy ovaries to reduce their cancer risk. This decision can be extremely difficult. Despite this, there is a lack of guidance on how to best support women in making this decision. Research that is guided by theoretical frameworks is needed to help inform clinical practice. We explored the decision-making process of women who are at an increased risk of developing ovarian cancer and had to decide for or against the removal of their ovaries.
Methods
A qualitative study of 18 semi-structured interviews with women who have attended a cancer treatment centre or cancer counselling and information service in New South Wales, Australia. Data collection and analysis were informed by the Health Belief Model (HBM). Data was analysed using qualitative content analysis.
Results
The paper describes women’s decision making with the help of the four constructs of the HBM: perceived susceptibility, perceived severity, perceived benefits, and perceived barriers. The more anxious and susceptible women felt about getting ovarian cancer, the more likely they were to have an oophorectomy. Women’s anxiety was often fuelled by witnessing family members suffer or die from cancer. Women considered a number of barriers and potential benefits to having the surgery but based their decision on “gut feeling” and experiential factors, rather than statistical risk assessment. Age, menopausal status and family commitments seemed to influence but not determine women’s decisions on oophorectomy. Women reported a lack of decision support and appreciated if their doctor explained their treatment choice, provided personalised information, involved their general practitioner in the decision-making process and offered a second consultation to follow-up on any questions women might have.
Conclusions
These findings suggest that deciding on whether to have an oophorectomy is a highly personal decision which can be described with the help of the HBM. The results also highlight the need for tailored decision support which could help improve doctor-patient-communication and patient-centred care related to risk reducing surgery in women at an increased risk of ovarian cancer.
(来源:科学网)
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