Progress on cancer survivorship Stephen Hindle Cancer Survivorship Programme Lead
The cancer story is changing A diagnosis of cancer once meant that the person either died within 18 months or was cured. Today the story is different - there are a large group of people who are living with incurable cancer. Many others are living with the consequences of treatment.
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)
Information and support from the point of diagnosis Information Decision support Optimal treatment Holistic Needs Assessment Work and Finance
Promoting Recovery: The Recovery Package
The Recovery Package 1. Assessment and Care Planning
Macmillan Electronic Holistic Needs Assessment
ehna and care planning / treatment summary
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: Patient Activity 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 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% 17
Useful resources to improve care
The House of Care approach determining alignment to cancer
Jam packed website Macmillan local projects Patient Packs Exercise to music DVD Evidence Reviews
Walking for Health
Support in the community I know how to support our customers in getting the right information on how to be more active after they ve had cancer I ve joined a local Walking for Health group that my pharmacist told me all about. I had a chat with the pharmacy team and they told me about all the resources that could help me I ve joined a local Walking for Health group that my pharmacist told me all about.
Work and cancer www.macmillan.org.uk/work
The impact of cancer and treatment Patient Reported Outcome Measures (PROMS) give insight to: 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.
Consequences of treatment Matching services to the numbers of risk Hundreds of people Tens of thousands Hundreds of thousands Severe, complex late effects Consequences ranging from mild to severe e.g. Bowel, urinary and sexual problems Increased risk of future problems e.g. CVD & osteoporosis
Supporting people with active and advanced disease Need better data collection Discussion at MDT new diagnosis support Identify best practice Early palliative care support improves quality and quantity of life
What is the health economic evidence? Routes from Diagnosis is a way of linking and analysing routinely collected data Maps the cancer journey from diagnosis onwards Describing health outcomes i.e. survival times, incidence, prevalence of cancer and non related cancer morbidities. Tells us how patients interact with the system e.g. when, how long and what it costs
All patients This is reach a survivorship one of these outcome groups taking different routes from diagnosis framework Everyone diagnosed with prostate cancer in England in 2004 25.3% 29.7% 7+ years, no complications 7+ years, morbidities Diagnosis 6.3% 5.9% 20.4% 12.4% 1-7 years, no complications 1-7 years, other morbidities 1-7 years, cancer complications 0-12 months
Health economics
Exciting new research Macmillan working with NCIN and Imperial College London to produce evidence on main drivers of cancer costs. Cost data will allow comparison of alternative pathways Investigate variation in costs in England across lung, breast, prostate and bowel cancer: Economic burden of cancer Differences in cancer care pathways and their effects on patient survival and costs Cost of emergency admissions of people with cancer
Supporting people with active and advanced disease Need better data collection Discussion at MDT new diagnosis support Identify best practice Early palliative care support improves quality and quantity of life
Aligning with the NHS Mandate in England
Transforming Cancer Services for London Commissioning cancer survivorship - an overview Paul Chiles, Programme Manager, Transforming Cancer Services for London programme, NHS England
Key survivorship messages The Recovery Package is key to good care and enables good communication across boundaries. A shift in professional culture is essential to enable supported self management. Many people can self manage their health with support, may need rapid access to professionals. Significant need arising from consequences of treatment can be prevented or treated. New models of cancer aftercare can improve quality and reduce cost.
Find out more www.ncsi.org.uk www.macmillan.org.uk www.be.macmillan.org.uk www.improvement.nhs.uk shindle@macmillan.org.uk