Joint Meeting EBMT
(UK)
& template
EBMT NG
EBMTNAP
Slide
October 5th
2012
Barcelona
London
(UK) 2008
7 February
Erik Aerts, Zürich (CH)
The
The European
European Group
Group for
for Blood
Blood and
and Marrow
Marrow Transplantation
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)
20
Attending conferences/workshops of
longer duration (i.e. 1-5 days)
39
Undertaking longer courses (one
academic year or more)
14
4
Using distance learning materials
E-learning using computer and webbased materials
10
0
20
40
60
80
% of respondents
100
Q835: 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, 31st 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 7th 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
their healthGroup
care providers
they and
are not
taking medication
regularly
ThetellEuropean
for Blood
Marrow
Transplantation
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 AdvocatesNetwork)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
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