Download Frameworks for understanding the cancer population

Frameworks foR
undeRstaNDing ThE
cancer population
H McConnell, R White, J Maher. Macmillan Cancer Support
Background
We are particularly interested in the ‘intermediate survival’ group. We believe
that hospital activity data2, along with clinical insight, suggests that this group
more often experiences ongoing complex clinical care needs such as relapse or
recurrence. It also suggests that they can face an especially uncertain future.1
This group may require a balance of acute intervention, self management and
chronic illness management. This compares to the need for a focus on the impact
of recovery and late effects for the longer-term survival cancers or a focus on
early diagnosis and good treatment or palliative care for the ‘shorter-term
survival’ cancers.
Figure 1
Proportion of people in each of the three cancer groups, estimates for the UK
New diagnoses in
2013 (% of incidence)
People living with
cancer up to 20 years
post diagnosis in 2010
(% of prevalence)
Deaths due to cancer in
2013 (% of mortality)
Longerterm
survival
cancer
types
Intermediate
survival
cancer types
Shorterterm
survival
cancer
types
137,000 (39%)
1,172,000 (65%)
33,000 (20%)
73,000 (21%)
343,000 (19%)
28,000 (17%)
95,000 (27%)
165,000 (9%)
72,000 (45%)
Note: Numbers do not add up to 100% as we have excluded leukaemia, head and neck cancer,
ill-defined and some rarer cancers in the categories as the highly diverse cancer pathways makes
them difficult to stratify. These excluded cancers made up 13% of incidence, 7% of prevalence and
18% of mortality.
We next focus on everyone living with a specific cancer type. For the most
commonly diagnosed cancers, we present the number of people in each phase of
their cancer journey (figure 2).3 For example, we estimate that more than 30,000
men living with prostate cancer may need care for progressive disease as well an
additional 11,000 men approaching end of life in the UK in 2010. People in each
of the phases, and with different cancers, are likely to have distinct needs. This
means different interventions may be required to support them.
Acknowledgements
Routes from Diagnosis was developed by Macmillan Cancer Support in partnership
with Monitor Deloitte and the National Cancer Intelligence Network (NCIN) operated by Public
Health England. We acknowledge the use of data for this analysis collected by cancer registries
across the United Kingdom.
References
1.McConnell H, White R, Maher J. Three cancer groups to explain the different complexity,
intensity and longevity of broad clinical needs. NCRI conference poster session presented at
NCRI Cancer Conference. 1–4 November 2015. Liverpool.
2.New unpublished Macmillan analysis from the Routes from Diagnosis research programme,
undertaken by Monitor Deloitte for Macmillan Cancer Support. See also Macmillan Cancer
Support. Routes from Diagnosis. The most detailed map of cancer survivorship yet. 2014.
3.Yip K, et al. Using routinely collected data to stratify prostate cancer patients into phases of care
in the UK: implications for resource allocation and cancer survivorship. Br J Cancer. 2015.
112(9): 1594-602.
4.Macmillan Cancer Support. Routes from Diagnosis. The most detailed map of cancer
survivorship yet. 2014.
5.Maddams J, et al. Projections of cancer prevalence in the United Kingdom, 2010–2040. Br J
Cancer. 2012. 107(7): 1195–1202.
For more information please contact [email protected]
November 2015
End of life
16,000
(11,000 year1)
End of life
11,000
(2,000 year1)
End of life12,000
(2,000 year1)
Progressive care
23,000
Progressive
care
32,000
Progressive
care
24,000
End of life
35,000
(29,000 year1)
Ongoing
monitoring
(10+ years)
21,000
Progressive care
(not estimated)
Ongoing
monitoring
(10+ years)
73,000
Ongoing
monitoring
(5≥10 years)
51,000
Ongoing
monitoring
(5≥10 years) 6,000
Initial
monitoring
(2–5 years)
9,000
Recovery &
readjustment
(1–2 years)
13,000
Initial
monitoring
(2–5 years)
48,000
Ongoing
monitoring
(10+ years)
29,000
Ongoing
monitoring
(5≥10 years)
62,000
Ongoing
monitoring
(10+ years)
235,000
Ongoing
monitoring
(5≥10 years)
127,000
Initial
monitoring
(2–5 years)
63,000
Active surveillance
(2+ years) 9,000
Active surveillance
(0–2 years) 7,000
Initial
monitoring
(2–5 years)
103,000
Watch & wait
(0–2 years)
18,000
Recovery &
readjustment
(1–2 years)
31,000
Recovery &
readjustment
(1–2 years)
27,000
Diagnosis &
treatment
(0–1 years)
50,000
Diagnosis &
treatment
(0–1 years)
43,000
Figure 1 shows the estimated sizes of the three cancer groups. The majority of
people living with cancer have a cancer type in the ‘longer-term survival’ cancer
group, but significant minorities of people have cancer types in the ‘shorterterm survival’ and the ‘intermediate survival’ groups (around 10% and 20%
respectively). The different groups are helpful to present a broad focus for service
design which should be considered in their management.
Diagnosis &
treatment
(0–1 years)
42,000
We present different views of the cancer population. Firstly, in framing all cancers,
we present three ‘cancer groups’ using survival rates for different cancer types. We
use this alongside evidence about the likely complexity, intensity and longevity of
needs for the majority of people in each group.1
Colorectal
Results
Lung
Available data on prevalence, incidence, mortality and survival of the UK’s
cancer population is reviewed alongside the wider evidence base on needs
and experiences. These include patient experience surveys, pathways of
care, key policy and strategies to inform the development of our cancer
population frameworks.
Prostate
Methods
Diagnosis &
treatment
(0–1 years)
29,000
We present different ways to frame the cancer population which can facilitate
practical application of this knowledge for different purposes and audiences.
Breast
Cancer incidence, mortality, survival and, more recently, prevalence have been
used as high-level proxies of the scale of need to support the development
and monitoring of cancer services. This data is limited in its ability to reflect the
complexity in disease pathways.
Recovery &
readjustment
(1–2 years)
47,000
Figure 2
Cancer care pathway – estimating the number of people in the United Kingdom by cancer type 2010
For example, the recovery package should be implemented as outlined in the
Cancer Strategy. This should happen from diagnosis and treatment so as to plan
ongoing care and facilitate recovery and readjustment as appropriate. For many
women with breast cancer in the post-treatment monitoring phase, a tailored
focus on early identification of potential consequences of cancer and its treatment
and management of cancer, alongside other conditions is key. This is rather than
the current outpatient follow-up models. Early identification of tumours and wellmanaged palliative and end of life care is particularly key for the majority of
people with lung cancer.
complications or other inpatient morbidities, also build up some of the highest
costs (groups 2, 3 and 6).
The pathways also present key ‘transition’ points between phases of care and the
number of people who may experience these in a year. Critically, these transitions
– for example from treatment to recovery – need to be well managed between
sectors of care and health professionals. That way, we can ensure patient care and
experience is not compromised.
The insight offered by Routes from Diagnosis is already being used to improve
cancer services in the UK, for example in South Yorkshire, Bassetlaw and North
Derbyshire Clinical Commissioning Groups. In these places, the framework has
been used to more deeply understand the ‘footprint’ of care in the local area and
inform the redesign of the colorectal cancer care pathway.
Finally, we present an example of detailed survivorship outcomes, or ‘Routes from
Diagnosis’, mapping the cancer journey from diagnosis to death or continued
survival for a cohort of people diagnosed with a specific cancer. We use survival,
recurrence, metastases, second cancers, and inpatient morbidities and care to
categorise people into different clinically relevant outcomes groups.4
Conclusions
Figure 3 presents one example from the work for prostate cancer and
demonstrates the wide range of outcomes within cancer types, even within survival
groups. Only a quarter of people survive long term (seven plus years survival) with
no metastases and no other inpatient morbidities with relatively low cost (group
8). Approximately 11% survive long term and develop metastases or have cancer
complications incurring much higher costs per patient (group 6).
Routes from Diagnosis provides the cancer community with a scientific, evidencebased framework. This can be applied to cancer care commissioning, service and
system design, and policy formulation, and to inform the direction of academic
research. Clinical teams and commissioners, who understand the variations in
clinical journeys, can target improvements to ensure people living with cancer
receive the right tailored care, at the right time, in the right place.
We know that the number of people living with cancer will increase to four
million by 2030.5 It is critical that key decision-makers in health, social care and
government – and cancer care teams – understand the range of needs of the
cancer population. This will ensure that they are able to develop services and
support for the whole of people’s cancer journeys. We have used these different
frameworks in a variety of ways. We have used them to quantify some of the needs,
support the Cancer Strategy and the National Cancer Survivorship Initiative, and
to inform the redesign of patient care pathways. We have found that different ways
of presenting the cancer population are needed in line with the end use of
the framework.
Further work in this area continues, for example quantifying more
precisely the time at which patients start and finish all treatments.
We are also looking to more accurately calculate the number of people requiring
support for specific long-term effects, recurrent cancer or metastatic disease.
The highest inpatient costs are associated with moderate survival (group 2)
as opposed to longer-term survival groups. Groups who experience cancer
Figure 3
Detailed Routes from Diagnosis survivorship outcome framework and average post-diagnosis inpatient costs for prostate cancer, men diagnosed in 2004 in England
Survival
time
0–12
months
Survivorship outcome
Metastases
No
Metastases
Metastases
presented
1–7 years
survival
Metastases
developed
Percentage of prostate
cancer patients
High inpatient care
2%
Low inpatient care
2%
High inpatient care
2.2%
Cancer complications
Single other inpatient morbidity
Multiple other inpatient
morbidities
Group 2
£12,000
Group 3
£2,700
Group 4
£11,500
Group 6
£7,500
Group 7
£3,000
Group 8
1.2%
3.1%
0.7%
6.7%
Single other inpatient morbidity
1.2%
Multiple other inpatient
morbidities
4.7%
Metastases
6.3%
1.4%
9.5%
Cancer complications
3.3%
Circulatory only
1%
MSK only
1.8%
Genitourinary only
Single other inpatient
morbidity
1.8%
2 other inpatient morbidities
2+ other inpatient morbidities
No other inpatient morbidities
Notes: Cancer complications = recurrence or additional primary
cancer; High inpatient care = patient spent more than 25% of
survival length in hospital; Low inpatient care = patient spent less
than 25% of survival length in hospital.
Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). MAC15794_FRAMEWORKS
£14,200
6.9%
No other inpatient morbidities
No
Metastases
Group 1
1.7%
Cancer complications
7+ years
survival
£6,700
6.2%
Low inpatient care
No other inpatient morbidities
No
Metastases
Average cost
per patient (£)
6.1%
4.8%
25.3%
MSK: musculoskeletal.
Average post-diagnosis inpatient costs exclude patients with no
inpatient records.
Group 5 is not applicable to the prostate cancer simplified
survivorship outcomes framework.