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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 www.meandibd.org:
“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.
Published Sep 10, 2013 eyeforpharma.com
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