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Progress on Cancer
Survivorship
Stephen Hindle
Cancer Survivorship Programme
Lead
The cancer story is changing
A diagnosis of cancer used to mean either
you died within 18 months or you were
cured, now there is a big group of people
who are living with incurable cancer.

Many others are living with the
consequences of treatment.
Today we will cover the learning from the
National Cancer Survivorship Initiative.
The number of people living with cancer is set
to double by 2030

Source: Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.
Median survival times
Cancer Patient Experience Survey (2013)
Taking action to improve outcomes
(2013)
Promoting Recovery: The Recovery
Package
The Recovery Package
1. Assessment and Care Planning
Macmillan Electronic Holistic Needs
Assessment
2. Treatment Summary
Cancer Care Review
•Post-treatment with GP assessment and care planning

•Financial impact of cancer
•Patient awareness of
prescription exemptions

•Possible late effects of cancer
and treatment
•Information needs in primary
care
3. Health and Wellbeing events
Sustaining recovery

•Care Co-ordination
•Remote Surveillance
Stratified Pathways: Southampton UHT
Tumour
Group

Period
covered

Pathway:
self
managed
(low /
medium
risk)

Period
from
end of
treatme
nt

Pathway :
Consultan
t led ( high
risk and
complex
ongoing
issues)

Breast

Jan 12 –
March 13

45%

2–8
months

55%

Colorectal Jan 12 –
March 13

30%

4–6
months

45%

Jan 12 –
March 13

70%

2–6
months

30%

Testis

Pathway:
Nurse led
(stoma
manage
ment and
complex
bowel
issues)

25%

14
Supporting self management
•Frontline staff can influence healthy behaviour
change:
•Raise /prompt issues of lifestyle (physical activity,
healthy eating) with patients
•Prompt self monitoring of behaviours
•Prompt specific goal setting related to behaviours

•Refer to appropriate specialist (lifestyle change
support) services if required
•New Top Tips for Professionals coming soon
Macmillan local
projects

Jam packed
website

Patient Packs

Exercise to
music DVD

Evidence
Reviews
Walking for Health
Work and cancer

www.macmillan.org.uk/work
The impact of cancer and its treatment
•Patient Reported
Outcome Measures
(PROMS) give insight:
• the quality of life for
those living with and
beyond cancer from their
experiences and point of
view
• the impact of cancer
and treatments on ability
to lead meaningful lives.
What did people tell us?
– 1 year post diagnosis nearly half feared recurrence and
almost a third were afraid of dying.

– 38% of prostate cancer survivors reported urinary
leakage and 58% reported impotence.
– 1 in 5 colorectal survivors had difficulty in bowel control.
– QOL is closely associated with disease status and
presence of other long term conditions.
– Almost a third reported doing no physical activity and
around a fifth did the weekly recommended CMO
physical activity i.e. 30 mins x 5.
– Increased physical activity associated with better QOL.
All patients reach one of these outcome groups
This is a survivorship outcome
– taking different routes from diagnosis

framework

25.3%

7+ years, no
complications

29.7%

7+ years,
morbidities

6.3%

Everyone diagnosed
with prostate cancer
in England in 2004

1-7 years, no
complications

5.9%

1-7 years, other
morbidities

Diagnosis

20.4%

12.4%

1-7 years,
cancer
complications
0-12 months
Insight – Health economics
Key survivorship messages
• A shift in professional culture is essential to enable
supported self management.
• New models of cancer aftercare gives opportunities to
improve quality and reduce cost.
• Many people can self manage their health with
support, with rapid access to professionals when needed.
• There is significant unmet need arising from
consequences of treatment, which can be successfully
addressed through prevention and treatment.
• Good survivorship care requires timely communication
across boundaries.

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'Living Well' Conference 2013: The National Context of Survivorship

  • 1. Progress on Cancer Survivorship Stephen Hindle Cancer Survivorship Programme Lead
  • 2. The cancer story is changing A diagnosis of cancer used to mean either you died within 18 months or you were cured, now there is a big group of people who are living with incurable cancer. Many others are living with the consequences of treatment. Today we will cover the learning from the National Cancer Survivorship Initiative.
  • 3. The number of people living with cancer is set to double by 2030 Source: Maddams J, Utley M, Møller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.
  • 6. Taking action to improve outcomes (2013)
  • 7. Promoting Recovery: The Recovery Package
  • 8. The Recovery Package 1. Assessment and Care Planning
  • 9. Macmillan Electronic Holistic Needs Assessment
  • 11. Cancer Care Review •Post-treatment with GP assessment and care planning •Financial impact of cancer •Patient awareness of prescription exemptions •Possible late effects of cancer and treatment •Information needs in primary care
  • 12. 3. Health and Wellbeing events
  • 14. Stratified Pathways: Southampton UHT Tumour Group Period covered Pathway: self managed (low / medium risk) Period from end of treatme nt Pathway : Consultan t led ( high risk and complex ongoing issues) Breast Jan 12 – March 13 45% 2–8 months 55% Colorectal Jan 12 – March 13 30% 4–6 months 45% Jan 12 – March 13 70% 2–6 months 30% Testis Pathway: Nurse led (stoma manage ment and complex bowel issues) 25% 14
  • 15. Supporting self management •Frontline staff can influence healthy behaviour change: •Raise /prompt issues of lifestyle (physical activity, healthy eating) with patients •Prompt self monitoring of behaviours •Prompt specific goal setting related to behaviours •Refer to appropriate specialist (lifestyle change support) services if required •New Top Tips for Professionals coming soon
  • 16. Macmillan local projects Jam packed website Patient Packs Exercise to music DVD Evidence Reviews
  • 19. The impact of cancer and its treatment •Patient Reported Outcome Measures (PROMS) give insight: • the quality of life for those living with and beyond cancer from their experiences and point of view • the impact of cancer and treatments on ability to lead meaningful lives.
  • 20. What did people tell us? – 1 year post diagnosis nearly half feared recurrence and almost a third were afraid of dying. – 38% of prostate cancer survivors reported urinary leakage and 58% reported impotence. – 1 in 5 colorectal survivors had difficulty in bowel control. – QOL is closely associated with disease status and presence of other long term conditions. – Almost a third reported doing no physical activity and around a fifth did the weekly recommended CMO physical activity i.e. 30 mins x 5. – Increased physical activity associated with better QOL.
  • 21.
  • 22. All patients reach one of these outcome groups This is a survivorship outcome – taking different routes from diagnosis framework 25.3% 7+ years, no complications 29.7% 7+ years, morbidities 6.3% Everyone diagnosed with prostate cancer in England in 2004 1-7 years, no complications 5.9% 1-7 years, other morbidities Diagnosis 20.4% 12.4% 1-7 years, cancer complications 0-12 months
  • 23. Insight – Health economics
  • 24. Key survivorship messages • A shift in professional culture is essential to enable supported self management. • New models of cancer aftercare gives opportunities to improve quality and reduce cost. • Many people can self manage their health with support, with rapid access to professionals when needed. • There is significant unmet need arising from consequences of treatment, which can be successfully addressed through prevention and treatment. • Good survivorship care requires timely communication across boundaries.