David Poppers，医学博士:我希望病人永远都能做的是，确定他们现在的位置，他们想要的位置，他们还没有到的位置，以及他们的优先事项。这真的可以帮助我们找到治疗的目标。治疗的目标是尽可能提高生活质量。这对很多病人来说是相当高质量的生活。我认为这是一个病人应该接受的信息，但可能并不经常接受。这是一个团队的努力，包括病人，他们的医生，护士，其他卫生保健专业人员，有时还有营养学家，还有家人，朋友和支持网络。然后，讨论一下当不同的疗法被提出时，没有一个正确的答案，有一种医学的艺术，它表现得如此不同。这里的关键是真正的共同决策，当病人和医生相互开放，讨论什么可能是最好的时，这是最好的影响。如果A计划不是最优的，下一步该怎么做。这就像其他事情一样。 It’s communication, and shared informed decision making.
关于你的克罗恩病，你希望你的医生问你什么问题，以进一步加深你们关于治疗的对话?
Tina Aswani Omprakash:说到治疗，我认为这真的是一个共同的决定，但它真的需要从医生开始。考虑到现在有很多治疗克罗恩病的方法，我认为医生们必须提出不同的治疗方法。也许在图表或表格上。把它们提前展示给病人和随之而来的任何护理人员。给他们看这张桌子。这些是某种作用机制。这就是它的工作原理。这是需要的时间。这些都是你应该预料到的结果，而且是基于你所患疾病的类型，因为疾病的位置与治疗方案有关。我应该有什么样的副作用? How long will it take for this to work? And how- how should I be feeling maybe in three or four months? What should I expect to get better right away versus later on? So what are those endpoints that we should see improving and how quickly? is one of the questions that I would ask. And I would really like this to be as much of a shared decision as possible. I think for me, going back a little bit into the cultural stigma, I think the doctor doesn’t just have to address medication. I think they have to address fear. I think they have to address stigma around the disease and treatment options and stigma and fear around the side effects. I’m not going to lie when I say this: There’s a bad rap around advanced therapies for Crohn’s disease, and I wish it wasn’t the case. Because of that sort of reputation, meaning what I see on the internet, that might have delayed my treatment and made me more hesitant to consider a treatment when the reality is I have not faced any side-effects that I know of, on the biologic that I’m on. And I think that’s the reality that needs to start being presented to patients.
