Joint Meeting EBMT UK NAP EBMT NG

Joint Meeting EBMT (UK) NAP & EBMT NG EBMT Slide template October 5 th 2012 Barcelona London (UK) 7 February 2008 Erik Aerts, Zürich (CH) The European Group for Blood and Marrow Transplantation

CML Learning Programme for Nurses & Other Allied Health Care Professionals The European Group for Blood and Marrow Transplantation

Defining the Scope of Haematology Nursing Practice Across Europe Erik Aerts, Monica Fliedner, Kathy Redmond, Alex Walton The European Group for Blood and Marrow Transplantation

The Survey • Survey objectives: – To gain insight into the current and emerging role of haematology nurses in Europe – To identify the learning needs of European haematology nurses – To provide information to enable EBMT-NG plan educational initiatives in a strategic manner The European Group for Blood and Marrow Transplantation

Conferences/workshops that last 1 – 5 days are the most preferred mode of delivery Attending conferences/workshops of short duration (i. e. 1 -4 hours) Attending conferences/workshops of longer duration (i. e. 1 -5 days) Undertaking longer courses (one academic year or more) Using distance learning materials E-learning using computer and webbased materials Q 835: What mode of delivery for continuing professional education do you prefer? Please rank in order of preference… Base: All Qualified Respondents (n=271) The European Group for Blood and Marrow Transplantation

Next steps The EBMT-Nurses Group… … will concentrate its efforts on developing educational initiatives that are targeted at knowledge deficits and areas that are of interest to haematology nurses E. Aerts, 31 st March 2008 The European Group for Blood and Marrow Transplantation

CML Learning Programme This CML learning programme has been developed to provide health care professionals with a better understanding of CML, and to help them educate and support both patients and their relatives The European Group for Blood and Marrow Transplantation

CML Learning Programme • There is evidence to show that nurses have learning needs in relation to CML • Good education of nurses are paramount to support the treatment process so that finally patients feel well educated in regards to the rationale of why they are treated with medications or undergoing a HSCT • Nurses desire basic and advanced information The European Group for Blood and Marrow Transplantation

Meeting of the CML Working Group • • • Janet Fricker (UK) Thorunn Saevarsdottir (IS) Arno Mank (NL) Josien Regelink (NL) Sebastian Ruch (CH) Erik Aerts (CH) The European Group for Blood and Marrow Transplantation

CML Learning Programme • The programme has been developed to be used at study days, conferences, symposia, panel discussions, lectures, local educational workshops or even as a self-learning tool • The focus is practical, based on the latest studies, literature based guidelines, the expertise of health care professionals with wide-spread experience of caring for patients with CML, and the views, of patients, with an emphasis on providing a holistic overview of treatment The European Group for Blood and Marrow Transplantation

CML Learning Programme How long is the CML Learning Programme? The CML Learning Programme consists of: • The toolkit on the USB stick has been divided into 4 standalone modules as well as 3 practice supporting case presentations The European Group for Blood and Marrow Transplantation

Module 1 Understanding Chronic Myeloid Leukaemia (CML) The European Group for Blood and Marrow Transplantation

Definition of CML The World Health Organization (WHO) classifies chronic myeloid leukaemia (CML) as a myeloproliferative disease characterised by the presence of the Philadelphia chromosome or BCR -ABL fusion oncogene Vardiman J. W. et al. Blood 2002, 100: 2292 -302 The European Group for Blood and Marrow Transplantation

Historical Milestones in CML 1845 John Hughes Bennett and Rudolph Virchow describe the first case of CML 1960 Peter C. Nowell and David Hungerford identify an abnormal chromosome called the Philadelphia chromosome in the blood cells and bone marrow of patients with CML Nowell & Hungerford. J Natl Cancer Inst 1960, 25: 85 -109 The European Group for Blood and Marrow Transplantation

Epidemiology of CML • CML is a complex disease that occurs in about 1 case per 100’ 000 of the population Black R. J. et al. Eur J Cancer 1997, 33: 1075 -1107) • CML is estimated to account for approximately one of every five cases of adult leukaemia Sawyers C. L. et al. NEJM 1999, 340: 1330 -1340) • CML affects men slightly more than women Ratio 1. 7: 1 Henderson, E. S. , Lister, T. A. , & Greaves, M. F. (2002. ) Leukemia 7 th ed. ) New York: Saunders The European Group for Blood and Marrow Transplantation

Epidemiology of CML • The risk of getting CML increases with age, with half of all CML patients older than 60 • CML is slightly more common among males than females. Ratio 1. 3: 1 The European Group for Blood and Marrow Transplantation

Diagnosis • A diagnosis of CML brings a time of acute distress for patients and their families • They have to deal with fear of the unknown • A diagnosis of “cancer” sparks major concerns about mortality The European Group for Blood and Marrow Transplantation

Module 2 CML Treatments The European Group for Blood and Marrow Transplantation

The European Group for Blood and Marrow Transplantation

CML: Therapy after the year 2000 UNI-Med Verlag AG, 2004, S. 48 The European Group for Blood and Marrow Transplantation

CML Prevalence Estimates • Prior to imatinib the annual mortality rate for CML was 15 to 20% of patients • Thus it is estimated that the prevalence of CML in the US in the next three decades may exceed 200’ 000 cases The European Group for Blood and Marrow Transplantation

Historical Milestones in CML 2003 The IRIS trial showed that imatinib was superior to the standard combination of interferon-alpha/cytarabine O’Brien S. G. et al. N Engl J Med 2003, 348: 994 -1004 The European Group for Blood and Marrow Transplantation

Module 3 Managing TKI treatments and special CML populations The European Group for Blood and Marrow Transplantation

Many treatment issues exist for CML patients prescribed TKIs • Getting to grips with how to take complex treatment regimens • Coping with side effects of treatment • Avoidance of drug interactions • Adherence to medications The European Group for Blood and Marrow Transplantation

Module 4 Support patients living with CML The European Group for Blood and Marrow Transplantation

Module 4 • Keeping patients informed about new treatments / research provides them with hope that they may one day be able to stop treatment • Knowing about the latest research can help to improve patient drug compliance and provide greater insights into their condition The European Group for Blood and Marrow Transplantation

Chronic myeloid leukaemia (CML) The challenge of adherence in oral anti tumour therapies The European Group for Blood and Marrow Transplantation

What is compliance/adherence? • Compliance – A medical term that is used to indicate a patient's correct following of medical advice • Adherence – The extent to which a patient follows a prescribed regimen, agreed with the health care provider, including medication, diet and exercise Haynes, Taylor & Sackett, 1979 The European Group for Blood and Marrow Transplantation

An adherent patient takes the right medications, in the right dose, at the right time, over time Takes the prescriptio n to the pharmacy but doesn’t pick it up Doesn’t get as far as the pharmacy Doesn’t persist with their treatment Doesn’t take the medication correctly Persists with their treatment over time Doesn’t persist with their treatment Non Adherent Patient The Patient agrees a therapeutic regimen with the doctor & gets a prescription Persists with their treatment Adherent Patient Fills the prescription Takes the medication correctly - at the right time, in the right dose The European Group for Blood and Marrow Transplantation

Adherence • A WHO study estimates that only 50% of patients suffering from chronic diseases in developed countries follow treatment recommendations Geneva, WHO 2003 • Imatinib non-adherence is widespread, with the ADAGIO study suggesting that less than 15% of patients are perfectly adherent Noens L. et al. Blood 2009, 113: 5401 -5411 The European Group for Blood and Marrow Transplantation

Oral therapies are increasingly used in the oncology-haematology setting Trend towards treating patients in an ambulatory care setting means health professionals often have limited opportunity to communicate with patients The European Group for Blood and Marrow Transplantation

Patients may not tell their health care providers they and Marrow Transplantation The European Group for Blood are not taking medication regularly

Nursing role / uncertainty If patients change treatments they will need to be reeducated about how to take their new medications and the different side effects I suppose, I’m not a doctor, but I don’t think missing one pill, or 3 pills, in a month affects me at all” The European Group for Blood and Marrow Transplantation

Improving patient motivation: the importance of good communication • It also enhances the patient’s understanding of the disease and its treatment • Increase motivation by exploring and resolving ambivalence • Educate patients. Emphasize the importance of adherence to successful therapy • Discuss expectations and goals The European Group for Blood and Marrow Transplantation

Return to adherence is team work • Patients can’t solve their nonadherence alone! • Adherence is team work: 1) Patients 2) Patients advocates 3) Physicians 4) Nurses 5) Psyco-oncologists 6) Pharmacists • Patient groups, Nurses and MDs are partners working for the same cause! The European Group for Blood and Marrow Transplantation

Nurses could play a key role in this process! Authors: Sabine Degen Kellerhals, Monica Fliedner, Erik Aerts The European Group for Blood and Marrow Transplantation

Three different CML case studies • Transplant as therapeutic option • CML chronic phase • Palliative CML care The European Group for Blood and Marrow Transplantation

Nursing take home messages • CML is set to change from a rare cancer to a chronic one • This will lead to an increasing role for nurses in the day to day care of patients living with a chronic condition The European Group for Blood and Marrow Transplantation

Proposal for the future • Evaluate effectiveness of the CML Learning Programme The European Group for Blood and Marrow Transplantation

Acknowledgements The Nurses Group of the European Group for Blood and Marrow Transplantation gratefully acknowledges the following individuals for their critical review and contributions to this CML Learning Programme: Erik Aerts (RN) Switzerland Joanne Bell (RN) United Kingdom Janet Fricker (Medical Writer) United Kingdom Jan Geissler (CML Advocates. Network)Germany Andreas Himmelmann (MD) Switzerland Katy Knight (RN) United Kingdom Arno Mank (RN) The Netherlands Nicole Nievergelt, (Secretary) Switzerland Josien Regelink (MD) The Netherlands Sebastien Ruch, Switzerland Thorunn Saevarsdottir (RN) Iceland Meinolf Suttorp (MD) Germany Sarah Watmough (RN) United Kingdom The European Group for Blood and Marrow Transplantation

CML Learning Programme This CML Learning Programme was supported by Novartis Date of preparation: 03. 2012 Copyright® 2012 European Group for Blood and Marrow Transplantation All rights reserved The European Group for Blood and Marrow Transplantation

Take Home Message To network and collaborate with Specialist Nurses Organisations and Special Interest Groups er ett the ge o sb ri T The European Group for Blood and Marrow Transplantation

erik. aerts@usz. ch The European Group for Blood and Marrow Transplantation

The European Group for Blood and Marrow Transplantation