Changing Nature of the CML Journey
President Elect EBMT-NG
The CML journey has changed dramatically; as a result novel approaches to the management of CML including the introduction of new drugs mean patients are now living longer and able to live quite a normal lifestyle. More and more patients are being cared for in an ambulatory care setting where they have limited opportunities for interaction with other patients and health professionals. For this reason a CML Patient and Nurse Advisory Meeting was held in Zurich Switzerland on November 10 and 11 in 2008. This meeting was organised by Novartis in cooperation with the EBMT-NG. Novartis invited 7 patient advocates and 6 experienced haematology nurses to attend. There were separate meetings with the advocates and nurses and then the patient advocates and nurses met together. The following subjects were discussed during those 2 inspiring days:
Challenges for patients transitioning from one oral CML therapy to another
Most patients do not appear to have had difficulty transitioning from one medication to another. The administration schedule and physical consequences of these new drugs is of course an important issue for discussion. The medication treatment options and developing resistance was another topic discussed between the patient advocates.
Barriers to meeting the informational needs of patients with CML
The value of educating patients in general is often underestimated. Lack of time is a key issue in the ambulatory care setting where most patients with CML are now seen. Physicians have a limited amount of time to spend with each patient and many patients are never seen by a nurse. Unlike with other chronic conditions, there are few clinical nurse specialists for CML who could help meet patients informational needs and promote treatment adherence. The potential of patient groups as a source of information and support should be used more often and too few health professionals refer new patients to patient groups. Some European patient groups have managed to reach more patients by involving health professionals in their organisation as either members or advisors.
Strategies for channelling information to patients
All over Europe Many patient groups develop informational resources themselves and distribute these to members written as well information on-line. Factors that contribute to the success of patient group-generated materials are involving key physicians and nurses in the development and checking of content and securing agreement from clinics and physicians to distribute materials. Key to the success of this approach is to ensure that the display with patient material is highly visible and that someone takes responsibility for replacing stock. Other useful suggestions from the patient advocates were to have a patient volunteer in the ambulatory care to provide support and information for other patients and to have a list of questions to ask their doctor about their disease and its treatment.
Promoting medicines adherence in CML
People living with CML want to live as normal a life as possible and consequently every effort should be made to ensure that adherence promoting strategies help achieve this goal. Although non-adherence is a multi-faceted and complex phenomenon, health professionals are very aware of the impact of non-adherence in the CML setting but are not aware of the scope of the problem and what they can do to promote medicines adherence. The most important way to promote adherence to oral CML medicines is by talking to patients and providing adequate explanation about their medicines. A specialist nurse could run a regular adherence consultation for groups of patients. In different European countries are initiatives for reminder devices such as SMS reminders and other timers A number of different types of patient materials have been developed such as: Informational leaflets, Dial-a-dose wheel, Dosing pads and pharmacokinetic schematics.
Meeting nurses’ educational needs about CML and adherence
There are significant gaps in nurses’ knowledge about CML and recent treatment advances especially outside of the specialist setting. There is value in developing a pan-European nurse education initiative on CML or to broaden the topic to chronic leukaemia’s since there are many commonalities across these diseases, especially from a nursing management perspective. Non-adherence should be an important component of this educational initiative. It would be valuable to include patient advocates in developing the curriculum and content. Novartis and the EBMT-NG are now exploring the possibility of moving this initiative forward.