Download Wells et al 2004 - Northern England Clinical Networks

Cancer survivorship ......
meeting the needs of people
following cancer treatment
Dr Karen Roberts
Macmillan Nurse Consultant / Reader
North of England Cancer Network Survivorship Lead
Northern Gynaecological Oncology Centre
Northumbria University
• To consider today:
– A ‘helicopter’ view of life after cancer
and a national update
– What people want (and need) following
cancer treatment
– Projects across the North of England
Cancer Network
– The key messages about survivorship
and the implications for future work
– Discuss how to move forward
Please get involved
Education
needs
Pelvic project
eg. Pilot
implementation
of GI treatment
algorithms
NECN
Survivorship
steering group
Strategy,
commissioning and
implementation plan
Influencing
guidelines in
all site specific
groups
Pilots eg.
HOPE /
MBCT-Ca
Do we really understand
survivorship?
2 million cancer survivors
1/4 to 1/5 of people (up to 500,000 people) currently
experience consequences of cancer and its
treatment that have an adverse impact on their
quality of their life (Armes et al, 2009)
This number is expected to increase to
600,000 by 2020 (Maddams et al, 2009)
Endocrine
Cognitive problems
Cardiac dysfunction
Renal dysfunction
Infertility & sexuality
Bowel/bladder problems
Second tumours
Emotional problems
Gill Levitt 2008
Public health problem?
• The impact of adverse effects increasing - more
cancer patients treated earlier & living longer
• Late effects contribute to cancer survivors
having worse health than those without a ca
diagnosis, similar to those with long term
conditions
• A spectrum - low grade to catastrophic but not
routinely recognised, documented or managed
The risks of surviving are
considerable
• Survivors of childhood cancers have a >19
fold risk of developing a second malignancy
(Dickerman 2007)
• Survivors of cancer are at greater risk of
second malignancies, cardiovascular disease,
diabetes, osteoporosis, and other chronic
conditions (Demark-Wahnefried et al 2005)
Particularly if you do not change your
lifestyle….
• Worse overall & disease free survival
associated with obesity, poor diet
and inactivity (Holmes et al 2005,
Haydon et al 2006, Meyerhardt et al
2007)
• Continuing to smoke is associated
with poorer QoL (Garces et al 2004),
worse treatment toxicity (Wells et al
2004) and poorer survival (Fox et al
2004)
“The trouble with our times
is that the future is not what
it used to be”
Paul Valery
French critic & poet (1871 - 1945)
A new generation of cancer
survivors
• Overall, 63% of males
and 54% of females
who are living with a
diagnosis of cancer are
aged 65 and over (ISD
2008)
• As many as 1 in 6 adult
patients over 65 in a GP
practice are survivors of
cancer (Grunfeld 2005)
• A hugely diverse group
• Cancer may not be the
biggest problem
“For a growing number of people,
cancer is no longer immediately
life threatening….
an increasingly unpredictable
illness trajectory where little is
known about the health outcomes
of individuals over and above their
chances of surviving the disease”
(J Corner EJON 2008)
Why don’t we know?
• Medical focus on prognosis, survival, objective
markers of recurrence is hard to shift
• Incomplete reporting and inconsistent
measurement of long term side effects
• Treatments are changing, long term side effects
are unknown
• Context of care is changing - outpatient ‘self-care’
• ‘End of treatment’ / ‘end of life’ much less clear cut
• Evidence we have is limited to the easily
measurable and the trial minority
Survivorship and the new landscape for
health and social care
• Wellness not illness
– Health promotion and education
– Managing transitions
• Late effects surveillance
– GP treatment summary and survivorship care plans
– Enabling self-management
• Key worker role
- may change from ‘specialist’ to ‘generalist’
• Involving patients and carers – our greatest untapped
resource
CCaT Consequences of Cancer Treatment
Collaborative
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The Consequences of Cancer Treatment collaborative (CCaT)
was created in 2009 by Macmillan Cancer Support to influence
and improve care for cancer survivors suffering side effects of
treatment
We are 12 people from England and Scotland, all researchactive nurses or allied health professionals
As "hybrid creatures" we bridge gaps between research and
practice, by speaking the languages of clinicians, academics,
educationalists, service improvers and policy makers.
www.cancerconsequences.org
Conducting
meaningful and
rigorous research
Developing
sustainable
services / systems
Consequences
of Cancer
Treatment
Collaborative
of care
Raising awareness
and delivering
education
10 Top Tips for Cancer Survivors
- creating the activated patient
Influencing policy
and changing the
culture of care
17
The ‘3 P’s’ of cancer survivorship
care
Conceptually, the care delivery falls into
3 major domains:
• Palliation of ongoing symptoms.
• Prevention of late effects of cancer
treatment.
• Health Promotion to maximise future
wellbeing.
(Ganz,P.A. 2011)
Greater attention to known
unmet needs
• Fear of recurrence is
the greatest concern in
cancer survivors
(Humphris & Ozakinci
2006)
• 5 out of 6 top unmet
needs relate to fears for
the future (Armes et al
2007)
Mindfulness based cognitive therapy for
cancer (MBCT-Ca) project
• Part of the NCSI test community.
• Partnership working with South of Tyne PCT’s,
acute trusts, mental health trust and cancer
network.
• Development of a group intervention for cancer
survivors which is skills based.
• Community based – normalising adaptation and
integration to a new normal.
• Building upon strengths and developing resilience
in the face of adversity.
Public images of survival can be
inspirational
“Live strong is exactly I guess what it says. It’s
one thing to live, but it’s another thing to live
strong, to attack the day and attack your life
with a whole new attitude. This was a gift for
me. I guess before the illness I just lived.
Now, after the illness, I live strong….
I’m Lance Armstrong, and I’m a
cancer survivor”
LiveStrong.org / online survivorship care plan
The need to recognise the
individual
“I need to know that this is
my body. And I need to
know everything that is
happening to my body. But
most of all I need to know
that you know that within my
body there is me”
Michele Angelo Petrone, Artist
Diagnosed with Hodgkins lymphoma aged 30, died 2007 aged 43
The Questions
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What are the issues or problems to be tackled ?
How do we screen / assess?
What interventions work!
What testing should be done in NECN?
How will we know if we have made a difference ?
What further research is needed ?
How does this work link to the management of other
long term conditions?
What may the work plan look like for our network?
Acknowledgements
Prof Jane Maher, Dr Diana Greenfield, Dr Isabel
White, Dr Mary Wells and my colleagues and
friends from CCaT.
Dr Sanjay Rao, Consultant Liasion Psychiatrist