The fickle nature of disease: is it hampering our treatments?

As medicine becomes more complex and the dictionaries of disease become libraries, it’s time for us to change our clinical language. We have a duty to explain the complexities of our treatments to payers, patients and communities in the simplest, most understandable and up-to-date way possible.

Some diseases have the audacity to remit and then exacerbate without any intervention

Especially now that we are discovering how unstable diseases can be and that they may even have use-by dates. They are susceptible to influences from the environment and change without notice. Not very helpful in our traditional disease-treatment pathway.

Not all diseases are real. Some diseases hide behind popular labels which feign a concrete disease like: fibromyalgia, repetitive strain injury, multiple chemical sensitivities, sick building, persistent refusal disorder and Gulf War syndromes. Others, through repetitive overuse, become so diffuse that they lose their clinical meaning such as “man flu”, polyp, bloating, hot flushes and “lifestyle diseases”.

For these conditions a discriminatory disease label offers no reassurance to patients nor payers as they are really defined by their symptoms. Many of them are better grouped together and defined by the type of treatment required.  “Complex ongoing problems not suitable for individual clinical or pharmacotherapeutic management but requiring team intervention, priority management plans and flexible follow up” needs an acronym but probably better defines those patients who should never have entered hospital in the first place.

Some chronic diseases are just unpredictable. They remit and then exacerbate without any accompanying clinical intervention, for example gingivitis, multiple sclerosis, depression and systemic lupus erythematosus. Supposedly long-life diseases can just disappear completely like childhood asthma and even some even spawn new diseases in the process of burning out such as thyrotoxicosis leading to hypothyroidism.

Reassuringly, treatment can still modify most conditions eg lipid modulation and cardiovascular events, but the long term nature of treatment needs to be recognized. For these conditions, we need a date stamp to describe the illness trajectory and the amenability to current or imminent treatment. With relapsing and remitting diseases each exacerbation can be defined by an episode number and a position in the treatment pathway: entry time, episode number, relative severity and treatment line appropriate for this episode. For example, a second episode of relapsing and remitting multiple sclerosis could be described as: multiple sclerosis – second life threatening exacerbation and alpha interferon insensitive.

It is quite challenging to acknowledge that the labels that have served us well for centuries are now not always fit for purpose. However, the changing context of medicine opens up many opportunities for us to think and work differently.

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