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

Stephen HindleCancer Survivorship Programme Lead

Progress on Cancer Survivorship

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 Package1. 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

14

Tumour Group

Period covered

Pathway: self managed (low / medium risk)

Period from end of treatment

Pathway : Consultant led ( high risk and complex ongoing issues)

Pathway: Nurse led (stoma management and complex bowel issues)

Breast Jan 12 – March 13

45% 2 – 8 months

55%

Colorectal Jan 12 – March 13

30% 4 – 6 months

45% 25%

Testis Jan 12 – March 13

70% 2 – 6 months

30%

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

Jam packed website

Patient Packs Evidence Reviews

Macmillan local projects

Exercise to music DVD

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 – taking different routes from diagnosis

Diagnosis

0-12 months

1-7 years, cancer

complications

7+ years, no complications

This is a survivorship outcome framework

1-7 years, other morbidities

1-7 years, no complications

7+ years, morbidities

25.3%

29.7%

5.9%

20.4%

6.3%

12.4%

SIMPLIFIED

EXAMPLE

Everyone diagnosed with prostate cancer in England in 2004

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.