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Patient Power: Too Much of a Good Thing?

Mary Assimakopoulos, reveals findings from the company’s Therapy Watch market research data, investigating patient behaviour in Crohn’s Disease and discusses how pharma can benefit from improved patient understanding
In an earlier column I discussed the issue of non-adherence in diabetes and proposed that a better understanding of patient behaviour may improve compliance. In this column, I’m going to be looking at Crohn’s Disease and asking if too much patient power is always a good thing.    

Crohn’s disease is a form of Inflammatory Bowel Disease that can affect any part of the gastrointestinal tract and has a wide range of symptoms. It commonly causes abdominal pain, diarrhoea, weight loss and vomiting but because it affects the immune system it can cause other problems such as anaemia, arthritis, lack of concentration, tiredness and inflammation of the eye.    

The Research Partnership conducts a regular tracking research study amongst physicians treating patients with Crohn’s disease in Europe and the USA. Data from this research reveals that surprisingly, despite how much it can affect day-to-day living, a proportion of patients are actively refusing biologic treatment.    

According to our study, nineteen percent of patients in the US and nine percent of patients in the EU who are being offered a biologic are refusing to take it, largely because of concerns about side effects. A proportion, around one third of American and one quarter of Europeans, also express fear over self-injection / IV infusion.    

Around 700,000 Europeans are diagnosed with Crohn’s disease each year. There is no known cure and, if severe, it can be very hard to live with. Some patients are successful at managing their disease with a controlled diet. A young patient with Crohn’s describes her symptoms on support website “Before diagnosis I lost 3 dress sizes and bled continuously. It took a while to be diagnosed, although I'd had symptoms since around the age of 14. I was off school a lot. People thought I was lazy as I felt so exhausted I couldn't do anything.”

Most treatments such as steroids will only help to reduce the symptoms. There are currently only two biologic treatments available to patients, Humira and Remicade, which are employed to bring patients with moderate to severe Crohn’s to a state of remission. In extreme cases patients can opt to have surgery, but as this involves removing large parts of the colon, physicians prefer non-interventional options and will only recommend this as a last resort.  

What more can be done to appropriately manage patients’ fears to get them on these more effective treatments? Why do some patients accept the (small) risks and others can’t get past them?    

Other findings from the survey suggest that patients do eventually “give in” and accept biologics, despite their initial fears, but at what cost to their overall health? Our data reveals that around a third of all current biologic patients in EU and US could have been treated earlier. Almost half (42%) of patients in the US and a quarter of patients in Europe had their biologic treatment delayed because the patient had refused to take the biologic up to that point.  It takes between 3-5 years from presentation for a patient to be diagnosed with Crohn’s and the earlier the patient is treated, the better the outcome. Have the short-term fears of the patient sometimes become too powerful, at the expense of the individual’s longer-term health needs?      

Therapy Watch found that whilst discontinuation rates are generally low with biologics, there is a small cohort of patients – around 8% - who elect to stop their own treatment, although we don’t know whether this is because they believe that their disease has improved or whether they are experiencing strong side effects. It would seem that the biggest challenge for the healthcare industry is getting patients to accept biologic treatment rather than persuading them to stick with it.      

Can too much patient power be a bad thing for patient outcomes? Maybe not, provided the patient is well informed and educated about their treatment options and their benefits. According to our survey, around three times the number of US patients (17%) versus EU patients (6%) actively asked to be put on a biologic. This may be a response to direct-to-consumer advertising, which is only legal in the USA. Are US patients more informed about treatment options? In which case, is patient education the way to improve patient outcomes? Something for the pharma brands to ponder….One thing is for certain, patients who are refusing biologic treatment need to be better informed. Perhaps a deeper understanding of patients’ needs will give further insight into why this group of patients are refusing treatment and reveal ways of changing perceptions and behaviour.

Sep 10, 2013

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22nd November 2013



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