未来的医生可以从罕见疾病的患者那里学到什么?

每年都这样做orphanet稀有疾病杂志与Findacure合作学生的声音论文竞赛。总冠军将在《稀有疾病日》杂志上发表,我们很荣幸能在这里介绍其他决赛入围者。对于本条目,要求来自世界各地的本科生和硕士学生使用案例研究来证明未来的医生可以从罕见疾病的患者那里学习什么。在此博客中,蒂莫西·巴达科克(Timothy Badcock)描述了他在帮助患者患有X连锁Agammaglobloinaemia的经验。

As a junior doctor and student on a Masters in Public Health course, I find that I am still learning every day from all sources, including patients (or perhaps尤其来自患者)。我看到的大多数患者在离开我的房间和内心心理时都会听,被诊断和治疗……但不是这个。该患者大大改变了我对患者健康信念/疾病模型的理解。

A 20 year old patient attended my morning clinic with a chest infection, which would usually be pretty common. My patient reported a two-week history of a cough with no sputum production and no shortness of breath. He didn’t feel unwell. When listening to his chest there were crackles on both sides and he didn’t have any raised lymph nodes. He suggested he wanted antibiotics, which is not a rare request.

“Whilst I’m here doc, can I weigh myself? I’m eating big meals all the time but I’m still not gaining weight.” The patient was 1.90m with BMI of 22.8. He had joined a rowing club and been told to gain 10% of his body weight. He had taken this to heart and set about to eating roughly double the recommended daily intake of food.

He had seen several different GPs for five similar coughs in the past 12 months and on two occasions had been prescribed antibiotics. He had a stable sexual partner and did not inject drugs. Prior to this year, he had never seen a doctor for anything other than immunisations. It struck me how often he was attending despite looking well and not striking me as health anxious. Subsequently I started him on antibiotics and took a series of blood tests to check his immune system.

I now ask patients about how they feel when they have been diagnosed with a condition.

他所有的常规血液都恢复正常,但是在第三天,他的免疫球蛋白(感染细胞)测试表明数字可以忽略不计。我拿起电话,立即将他转介给免疫学。第二天,该患者参加了门诊任命,并被诊断出患有X连锁的Agammaglobloinaemia,这是他出生以来本来就会遇到的一种罕见的染色体疾病,发现他无法产生与感染作用的免疫细胞。二十多岁的症状表现出极为罕见的,因为这种病通常会出现复发性疾病,从终止母乳喂养的6个月大。

经过几周的抗生素和输液来代替他失踪的免疫球蛋白,他陷入了我的房间。“文档,检查我的体重”。他在6周内获得了5公斤的增长。“今天我该如何帮助您?”我问。“哦,没事,我只是想感谢你听我的话。”

Since then I have seen him on several occasions to review how he has been doing. He has been fully educated about his condition by both myself and his team of doctors in the hospital. He understands that he will need lifelong treatment and that he is at a much higher risk of infections compared to his peers. Attending all of his regular infusions will limit that risk but he will still need to be vigilant about preventing infections and self-monitoring.

The most interesting part was how much he believed that his new diagnosis gave him a reason for why he had been unable to put on weight, and why he had always had a sniffly nose for as long as he could remember. For him the revelation opened doors rather than closed them. Now he could put on the weight he needed to do the activities that he enjoyed. He had even more energy than he had previously. He understood his body. He was happy to talk about his experience with others. Eventually he stopped coming to see me, too busy enjoying his new life of vitality.

As a consequence of meeting this patient, I now ask patients about how they feel when they have been diagnosed with a condition. I ask what the diagnosis means to them and I subtly try to shift their illness belief towards looking at the positive aspects. I am a firm believer that people rarely remember what you say, but that they will remember how you made them feel. In the case of a life-long chronic disease, no approach is more important than this as it encourages patients to engage with their doctor for what will be a life-long journey. I want to make patients optimistic.

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