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National Cancer Survivorship Initiative
Survivorship Update February 2012
Steve HindleMacmillan Survivorship
Programme Lead
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative (NCSI) Vision
The��vision��of�the��NCSI��is��that��by��2012,��those��living��with��and��beyond��cancer��are��supported��to�live�as�healthy�and�active�a�life�as�possible��for��as��long��as��possible.
National Cancer Survivorship Initiative
What do we know
• Evidence�of�what�the�problems�are• How�many�cancer�survivors,�and�where�they�are�
in�their�experience�of�cancer• PROMs�will�show�how�many�people�have�what�
problems�(March�2012)• Designed�and�testing�evidence-based�
sustainable�services• Economic�evidence• Mapped�to�NHS�Outcomes�Framework
National Cancer Survivorship Initiative
Enga
gem
ent w
ith c
linic
ians
&
com
mis
sion
ers
2009 2015 Time
Investigate Innovate
Implement
We are here
NCSI: where we are in the initiative cycle
National Cancer Survivorship Initiative
Emerging principles
• Personalised�pathways�of�care,�rather�than�one�size�fits�all,�using�risk�stratification�approach
• Many�people�can�be�encouraged�to�self�manage�with�support�,�with�rapid�access�to�professionals�when�needed
�• Importance�of�holistic�assessment�leading�to�care�plan�to�meet�
the�individual’s�personal�circumstances
• Information�provision�to�meet�individual�needs,�timely,�promoting�confidence�and�choice
National Cancer Survivorship Initiative
Key messages• Current�services�are�not�meeting�patients�needs,�and�will�not�be�able�to�
cope�with�future�numbers.
• Through�investment�in�new�models�of�aftercare�for�cancer�survivors,�there�are�opportunities�to�improve�quality�and�efficiency�of�services.��
• Assessment�and�care�planning�will�personalise�care�and�can�make�significant�differences�to�patient�quality�of�life.
• Supported�self�management�can�improve�the�quality�of�life�for�survivors
• Good�survivorship�care�requires�timely�communication�across�health�and�social�care�boundaries
National Cancer Survivorship Initiative
3 Levels of care and support
National Cancer Survivorship Initiative
NCSI Prototypes
NHS�Improvement�leading�testing�of�risk�stratified�pathways�in�8�prototype�communities�across�15�projects�in�Breast,�Colorectal,�Lung,�Prostate.
Testing�enablers�of�remote�monitoring�and�care�coordination.
Ipsos�MORI�baseline�report�out�now�on�NHS�Improvement�websiteFinal�report�March�2012.
NHS Improvement - CancerEffective follow up: Testingrisk stratified pathwaysMay 2011
National Cancer Survivorship Initiative
‘I�need�to�know�my�patient’s�treatment�and�care�is�safe’
Care coordination Remote surveillance
‘I�want�to�be�treated�as�a�person�and�know�who�to�contact�when�I�need�help’
National Cancer Survivorship Initiative
Assessment and care planning
‘No�one�asked�me�what�I�thought�was�important’��
75% of patients did not know if they had a care plan Picker 2009
• Piloted�assessment�and�care�planning�2009/10• Treatment summary tested�-�available�to�implement• Cancer Care Review templates�available• Testing�electronic�solutions�to�assessment�and�care�
planning• Assessment�and�Care�planning�now�a�Peer�Review�
measure
National Cancer Survivorship Initiative
Self management support‘I�didn’t�know�what�I�could�do�to�help�myself’1 in 3 patients reported 5 moderate / severe unmet needs at end of treatment - for 60% this had not improved 6 months after treatment, Armes et al 2009
Involves�approaches�which�empower�and�activate�people�so�that�they�feel�confident�about�managing�their�condition�and�are�more�likely�to�change/alter�their�behaviour.
•‘activating’��people�so�that�they�can�use�information�and�support�to�manage�their�health�and�alter�behaviours.
•Re/skill/train�clinicians�to�take�a�supportive�‘power�sharing’�rather�than�a�‘power�holding’�approach.
•Use�service�improvement�expertise�to�make�changes.Testing�at�Southampton�University�Hospital�Trust.
National Cancer Survivorship Initiative
Health and Well Being Clinics - 15 pilots 2010/11
• Half�day�event�to�help�patients�manage�transition�at�end�of�treatment.�
• Information�re�signs�and�symptoms,�signposting�to�services,��support�and�discussion.
• Increased�patients’�knowledge�and�confidence,�knew�which�services�to�use,�
‘I�felt�abandoned�and�we�didn’t�know�where�to�turn’Macmillan�HWB�survey�2008
National Cancer Survivorship Initiative
Physical activity
‘I�know�that�physical�activity�could�help�me’
• Helps�with�treatment�effects�inc.�fatigue,�depression
• Physical�activity�influences�breast,�colorectal�and�prostate�mortality�and�recurrence
• 12�week�pilot�-�breast�cancer�survivors�active�in/after�treatment�saved�NHS�£1500�in�6�months
• �‘Move�More’�campaign
National Cancer Survivorship Initiative
*Adjusted for BMI, smoking Matched to non-cancer survivor controls on the basis of age, sex and practice
OR: 1.33
More chronic conditions Heart failure & breast cancer
Nada Khan In press BJC
National Cancer Survivorship Initiative
*Adjusted for smoking and underweight Matched to non-cancer survivor controls on the basis of age, sex and practice
OR: 1.59
More other chronic conditionsosteoporosis & prostate cancer
Nada KhanIn press BJC
National Cancer Survivorship Initiative
Consequences of cancer treatment‘I�know�about�potential�problems,�how�to�recognise�them�and�get�help,�and�professionals�understand�there�can�be�solutions.’�•Informing patients eg�promoting�use�of��Macmillan�Radiotherapy�booklets,�testing�web�based�Oncolink•Enabling non specialists to recognise eg�Launch�BSG�guidance�for�professionals�Q4•Developing specialist services eg�for�complex�late�effects�of�pelvic�treatment�across�3�sites•Understanding patterns eg�linking�data�sets�to�give�‘NHS�footprint’��for�patients
National Cancer Survivorship Initiative
New chronic conditions RT & CT related illnessese.g pelvic cancers
• 17,000/ year pelvic RT (UK)• gynaecological, urological,• colorectal, anal cancers • 80,000 living after pelvic RT• Bowel, urinary, sexual issues
?
National Cancer Survivorship Initiative
‘It’s the little things put
together that wear us down’
‘My GP says for a long time he did not know what was going on…I
thought I was making a fuss.’
‘‘My oncologist asked how I was – how embarrassing
to tell him.’
National Cancer Survivorship Initiative
• To improve care for people living with the effects of cancer • Bridge the gap between research and practice• Individual and collective projects• Influencing UK research and policy agenda
12 Post Doc nurses & AHPS taking the agenda forward.
Consequences of Cancer TreatmentCollaborative (CCAT) http://www.cancerconsequences.org/index.html
National Cancer Survivorship Initiative
NCSI Vocational Rehabilitation model (draft) ‘No�one�gave�me�advice�and�I�lost�my�job’
National Cancer Survivorship Initiative
Survivorship Patient Reported Outcomes Measures (PROMs)
• Pilot�PROMs�survey�to�understand:�����-�outcomes�for�people�following�cancer�treatment�over�time;�����-�their�quality�of�life�����-��variations�in�outcomes�e.g.�co-morbidities;�����-�Eg�how�many�colorectal�cancer�patients�cannot�control�their�
bowels�years�after�treatment?• 4992�questionnaires�sent,�response�rate�=�68%• Reports�March�2012• DH�hope�to�further�develop�PROMS�Survey,�potential�national�
roll-out�2012.��
National Cancer Survivorship Initiative
Success measures
‘How�will�we�know�that�the�NCSI�has�made�a�difference?’Improving�Outcomes:�A�Strategy�for�Cancer�(DH�2011)•Reduce�%�survivors�with�unmet�physical,�psychological,�social�needs•Increase�%�cancer�survivors�able�to�live�independently�/�able�to�work�•who�had�cancer�as�a�child�or�young�person�now�in�education/�employmentEconomic�evidencePROMSEvaluationsMore�to�be�done
National Cancer Survivorship Initiative
��
Diagnosis�&�Treatment Rehabilitation Early�
monitoringEnd�of�life�care[Year�1�deaths]
Progressive�illness*
Newly�diagnosed�–�assumed�need�of�acute�sector�
care
Surviving�the�first�year�–�assumed�
need�of�rehabilitation�
Up�to�5�and�10�years�from�diagnosis�–�
designated�as�‘early�monitoring’
Incurable�disease�but�not�in�last�year�of�life�–�assumed�
need�more�treatment�and�
support
End�of�life�care�in�last�year�–�subset�of�deaths�in�first�year�of�diagnosis
Identifying the cancer care pathway
Later�monitoring
Beyond�10�years�from�diagnosis�–�designated�‘later�
monitoring’
* The numbers in the progressive illness group will be underestimated and the numbers in the monitoring groups will be overestimated as estimates for significant late effects have not been made.
We aim to estimate the number of people likely to be in a given phase of the care pathway in a given year
National Cancer Survivorship Initiative
Cancer which has spread
National Cancer Survivorship Initiative
Cancer which is incurable
National Cancer Survivorship Initiative
Recurrent cancer & the need for early treatment with chemotherapy ?
0.0
00
.25
0.5
00
.75
1.0
0
Pro
po
rtio
n s
urv
ivin
g
0 6 12 18 24 30 36 42 48 54 60
Months since randomisation
Ovarian cancer (OVO 5) Same Survival early cancer treatment or wait for symptoms (Rustin et al 2009)
EarlyDelayed
National Cancer Survivorship Initiative
Palliative care can improve survival as much as chemotherapy
National Cancer Survivorship Initiative
Breast cancer care pathway – estimating the number of women in the UK, 2008*
Colorectal cancer care pathway – estimating the number of people in the UK, 2008*
Lung cancer care pathway – estimating the number of people in the UK, 2008*
