The Chronic Myeloid Leukaemia Learning Programme, devised by the European Group for Blood and Marrow Transplantation (EBMT) Nurses Group, represents the first specialist Chronic Myeloid Leukaemia (CML) education programme that has been developed in Europe especially for nurses. The programme, which will be launched during the opening ceremony of the annual meeting of the European Group for Blood and Marrow Transplantation (EBMT), to be held in Geneva, Switzerland, 1-4 April, 2012, has been designed to help nurses and other allied health care professionals through the rapidly evolving CML treatment landscape and enable them to deliver optimal care to patients.
CML is a haematologic malignancy, affecting people of all ages that occurs as a result of an acquired genetic mutation called the Philadelphia chromosome. With the advent of the recent tyrosine kinase inhibitors (imatinib in 2001, dasatinib in 2006, and nilotinib in 2007), CML has been transformed from a fatal condition (where patients had a median survival of three to six years) into what is now viewed as a chronic condition, where many patients live normal life spans.
"More than ever well informed health care professionals are now needed to help patients cope with the complexity of living with a chronic condition, where they will need to take medication every day for the rest of their lives, and enable them to achieve the best possible quality of life," says Erik Aerts, a past president of the EBMT Nurse’s Group, and current member of the Scientific Committee of the EBMT Nurses Group.
Nurses, agree patient advocates, have a major role to play in educating patients. "Even if CML has become a chronic disease today, it can quickly turn into a life-threatening condition if not treated effectively. This makes it essential for patients to understand the mechanisms of treatment, how to address side effects, and the importance of long-term adherence. Nurses can really help ease the patient journey, "says Jan Geissler, a CML patient advocate and co-founder of the CML Advocates Network, the Leukemia Patient Advocates Foundation and Leukämie-Online.
For areas such as haematology, oncology and haematopoietic stem cell transplantation, where treatments and side effects are intensive, specialist training is particularly important.
While the comprehensive EBMT programme has been primarily designed to target stem cell transplantation, oncology, and haematology nurses, it could just as well be used by nurse assistants dieticians, social workers, medical students, physicians and even patient organisations.
The programme, developed with flexibility in mind, has been organised into four separate modules. These can be used at study days, conferences, symposia, panel discussions, lectures or even as a self-learning tool. They could be used as an intensive course over one day, or scheduled to run over a number of weeks.
- In the first module participants gain an appreciation of the historical evolution of CML treatments, learn about the epidemiology and etiology of CML, common symptoms, different stages of CML, techniques used to diagnose/monitor CML, and different prognostic scoring systems.
- In the second module current CML treatments are outlined (stem cell transplantation and TKIs), the problems of secondary resistance explored, and options for patients experiencing progression considered. Results of all the landmark trials are provided in detail.
- In the third module challenges involved in taking the different TKI treatments are explored (including side effects), the importance of adherence is emphasized and special issues for different populations of CML patients reviewed (including fertility issues for people of child bearing age, the elderly and children).
- The final module considers the ways that health professionals can best support patients living with CML. It helps them gain an appreciation of the issues that patients living with CML face on a daily basis, looks at the patient journey, and the pros and cons of entering a clinical trial, and explores end of explores end of life issues, and new treatment options on the horizon.
Throughout the modules, which are fully referenced, the main "take home" messages for nurses have been highlighted. One particular strength of the programme, says Aerts, has been the use of real life case studies that include CML in the chronic phase, transplant as a therapeutic option and palliative CML care.
"The modules provide a really holistic overview of CML allowing health professionals to gain an inside out knowledge of the condition, "says Aerts, who led the writing group, working with expert nurses, physicians and patient representatives.
Inspiration for the development of the programme came from a worldwide survey, undertaken by the EBMT Nurses Group in 2007, to identify the learning needs of haematology nurses ¹. The survey, completed by 271 nurses from 25 countries, revealed that only 38% of respondents felt they had an important role to play in helping patients make decisions about treatment.
"The limited availability of haematology training courses, we found, was a problem facing nurses across the world. In order for nurses to reach their full potential we felt they needed more accessible educational courses," says Aerts.
The survey found that respondents identified short workshops, lasting between one and five days, as being their preferred educational format as opposed to e learning, or distance learning materials.
The programme is also available for download here.
E Aerts, M Fliedner, K Redmond, et al. Defining the scope of haematology nursing practice in Europe. European Journal of Oncology Nursing 2009. doi: 10.1016/j.ejon.2009.06.008