Transcript Document

Survivorship Update February 2012
Steve Hindle
Macmillan 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
Engagement with clinicians &
commissioners
NCSI: where we are in the initiative
cycle
Implement
Investigate
2009
Time
National Cancer Survivorship Initiative
Innovate
2015
We are here
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 - Cancer
Effective follow up: Testing
risk stratified pathways
May 2011
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 website
Final report March 2012.
National Cancer Survivorship Initiative
Care coordination
‘I want to be treated as a
person and know who to
contact when I need help’
National Cancer Survivorship Initiative
Remote surveillance
‘I need to know my
patient’s treatment and
care is safe’
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
‘I felt abandoned and we
didn’t know where to turn’
Macmillan HWB survey 2008
National Cancer Survivorship Initiative
• 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,
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
More chronic conditions
Heart failure & breast cancer
OR: 1.33
Nada
Khan
In press
BJC
*Adjusted for BMI, smoking
Matched to non-cancer survivor controls on the basis of age, sex and practice
National Cancer Survivorship Initiative
More other chronic conditions
osteoporosis & prostate cancer
OR:
1.59
*Adjusted for smoking and underweight
Matched to non-cancer survivor controls on the basis of age, sex and practice
National Cancer Survivorship Initiative
Nada Khan
In press BJC
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 illnesses
e.g pelvic cancers
?
•
•
•
•
•
National Cancer Survivorship Initiative
17,000/ year pelvic RT (UK)
gynaecological, urological,
colorectal, anal cancers
80,000 living after pelvic RT
Bowel, urinary, sexual issues
‘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
‘It’s the little
things put
together that
wear us down’
Consequences of Cancer Treatment
Collaborative (CCAT)
http://www.cancerconsequences.org/index.html
12 Post Doc nurses & AHPS taking the agenda forward.
• 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
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/ employment
Economic evidence
PROMS
Evaluations
More to be done
National Cancer Survivorship Initiative
Identifying the cancer care pathway
Diagnosis &
Treatment
Rehabilitation
Newly diagnosed
– assumed need
of acute sector
care
Surviving the first
year – assumed
need of
rehabilitation
Early
monitoring
Up to 5 and 10
years from
diagnosis –
designated as
‘early monitoring’
Later
monitoring
Beyond 10 years
from diagnosis –
designated ‘later
monitoring’
Progressive
illness*
Incurable disease
but not in last year
of life – assumed
need more
treatment and
support
End of life care
[Year 1 deaths]
End of life care in
last year – subset
of deaths in first
year of diagnosis
We aim to estimate the number of people likely to be in
a given phase of the care pathway in a given year
* 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.
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 ?
0.75
0.50
0.25
0.00
Proportion surviving
1.00
Early
Delayed
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)
National Cancer Survivorship Initiative
Palliative care can improve survival as much as
chemotherapy
National Cancer Survivorship Initiative
National Cancer Survivorship Initiative
End of life care 35,000 (28,000
year 1)
Progressive illness ???
Later monitoring 21,000
Early monitoring: 5 ≥ 10 years
6,000
Early monitoring: 2 ≥ 5 years
9,000
Rehabilitation 12,000
Diagnosis & Treatment
41,000
Lung cancer care pathway – estimating the number of people in the UK, 2008*
End of life care 16,000 (11,000
year 1)
Progressive illness 24,000
Later monitoring 73,000
Early monitoring: 5 ≥ 10 years
51,000
Early monitoring: 2 ≥ 5 years
45,000
Rehabilitation 28,000
Diagnosis & Treatment
40,000
End of life care 12,000 (2,000 year
Progressive illness 24,000
Later monitoring 226,000
Early monitoring: 5 ≥ 10 years
122,000
Early monitoring: 2 ≥ 5 years
100,000
Rehabilitation 44,000
Diagnosis & Treatment 48,000
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*