Compliance and Haemophilia: WFH convention

Adherence to haemophilia therapy
Some lessons from WFH in Melbourne


Haemophilic patients have a genetic defect. As a result of that, their blood clots not as it should be. If they a have a bleed, it can take a long time until the wound stops bleeding. Therefore, patients have to inject themselves with medication (blood clotting protein F8 and/or F9). You can imagine, the importance of good adherence.


Unconsciously non-adherent

In a study patients, doctors and nurses were interviewed on this topic (De Moerloose, et all. Haemophilia (2008), 14, 931-938). All of the patients said they were 100% compliant to their treatment. But when researchers compared the number of units medication they were prescribed, and the number they really used, there was a discrepancy. 62,8% of the patients was unconsciously non-adherent. Once again, this teaches us that we have to be aware of bias in self-reported adherence.

Researchers found that good compliance was associated with the quality of care patients received from their doctors, nurses and haemophilia treatment centre. The longer the duration of time spent at visits the more adherent they were. Also a good relationship with the doctors and nurses predicts a better compliance.


Big place for app’s

The researchers gave some suggestions to improve adherence. Some of these were very practical: e.g. easier ways to give an injection, medication that can be stored at room temperature, (when travelling), better information about the risks of non-adherence, … The patients believed that electronic diaries and internet tools could be very useful for obtaining a better compliance.


Euh? … Disadvantages of app’s?

Meanwhile we’re 6 years further in time (the study was published in 2008). And indeed, here at the WFH we saw much app’s and electronic tools for self-monitoring. Of course, …. we believe that these tools can increase compliance. But what are the risks? Well, in Melbourne we heard for the first time someone discussing the disadvantages of app’s en electronic tools. Contra’s are:

  • It’s often time consuming for the patient.
  • What if there is no internet?
  • App’s are often free, but you have to have a smartphone.
  • This raises the question of affordability.
  • There are still questions of confidentiality.

A more uncommon remark came on “the centre of knowledge’. One of the major disadvantages is the fact that some patients may get to much responsibility. Some app’s are putting nearly the whole follow up in the hand of the patients. But, what about patients who give deliberately false input? Are all the haemophilia patients empowered/trained enough to be the centre of knowledge? After all, there are more pro’s than con’s. But, here was some food for thought!