CMyGuideline

Chronic myeloid leukaemia (CML) is a serious disease requiring patients to take medication daily and, for the time being, for life. Treatment and monitoring have been described in a recent guideline, however, compliance by patients (medication adherence) and practitioners (adherence monitoring frequency to prevent progression) is suboptimal. We see two main reasons for this two main reasons for this:

(a) The guideline is insufficiently practical due to a gap between the highly standardised conditions in which the evidence was generated vs. the complex and heterogeneous situation of individual patients with, among other things, therapy non-adherence dose adjustment, perceived side effects, medication switching, real-life monitoring and personal treatment goals

b) The guideline is not very accessible: products to promote implementation such as translation of the guideline to decision moments within the care process with e.g. a clinical decision support system, decision aids in shared decision-making are largely lacking. Patients do not find their way to a study suitable for them while guidelines recommend study-based treatment. Patients with low health literacy are poorly reached by existing initiatives.

As a subspecialty with almost exclusively (very) rare disorders in its area of expertise, the professional association is looking to make practical and realistically usable guidelines accessible to its members and to patients involved, incorporating patient-reported information and information from the consulting room. Especially the rarity of haematological disorders requires accessible guidelines, so that even doctors with few patients have information quickly available, and so that patients themselves have the necessary information and can thus take control.

This is a grant from the healthcare innovation and research funding organisation ZonMW.