National Update: Living With and Beyond Cancer Implementing Strategic Priority 4 of the National Cancer Taskforce Duleep Allirajah Head of Policy, Macmillan Cancer Support
Total Prevalence - now Total Prevalence - 2030 Maddams J, Utley M, Moller H. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer. 2012. 107: 1195-1202.
3 in 4 people living with cancer are in the survivorship stage 1 1 in 4 of them deal with consequences of their treatment 2 1 in 5 of cancer survivors may have unmet needs 3 1.Maher J and McConnell H. New pathways of care for cancer survivors: adding the numbers. Br J Cancer. 2011. 105: S5-S10 2.Macmillan Cancer Support. Throwing light on the consequences of cancer and its treatment. 2013. London 3.Armes J et al. Patients supportive care needs beyond the end of treatment: A prospective, longitudinal survey. Journal of Clinical Oncology.2009. 27:36 6172-6179
I had colorectal surgery, its side effects affected my life badly. I should have been warned about those side effects to decide. If I knew about them I would not [have gone] ahead with the surgery. (Person with colorectal cancer, 3 years after diagnosis) I felt I had no support following treatment, apart from the occasional check-ups. When treatment ends you feel very vulnerable that the cancer will return, but I had noone professional to turn to for support. My GP was very kind when I went to him, but at no time did my GP practice contact me to check how I was. (Person with NHL, 3 years after diagnosis)
Relative five-year survival Estimated prevalence Estimated incidence Do well Organ confined prostate Testicular Kidney - Stage 1 Localised or regional breast cancer Cervix - Stage 1 Melanoma of skin Uterus - Stage 1 Hodgkin lymphoma Colorectal - Dukes A and B 1,170,000 56% 127,000 38% Intermediate Non-Hodgkin lymphoma Bladder Uterus - Stage 2-4 Kidney - Stage 2-4 Colorectal - Dukes C Ovary Myeloma Cervix - Stage 2-4 Metastatic prostate Distant breast cancer 460,000 22% 70,000 21% Poor health Brain Stomach Oesophagus Lung Liver Mesothelioma Colorectal - Dukes D Pancreas 0% 100% 180,000 9% 95,000 29% McConnell H, White R, Maher J. Understanding variations: Outcomes for people diagnosed with cancer and implications for service provision. 2014. European Network of Cancer Registries Scientific Meeting and General Assembly
Number of concerns* (green bars) Average concern score (0-10) (red dots) Physical & emotional concerns account for 80% of all concerns. Family concerns are ranked as having the highest impact on people s lives. 8,000 10 6,000 8 6 4,000 4 2,000 2 0 *Concerns Checklist only Physical concerns Emotional concerns Practical concerns Family concerns Spiritual or religious concerns 0 How do we know if people are getting the right type of support for their needs?
Shift from medical model of follow-up to tailored aftercare A recovery package at the end of treatment including assessment & care plan Risk-stratified follow-up pathways Support to enable people to self-care and live well after treatment
Ranking Top five concerns 1 Tiredness and fatigue 2 Worry, fear and anxiety 3 Sleep problems / nightmares 4 Pain 5 Constipation / diarrhoea Between January 2012 and April 2015, Macmillan s partners carried out 13,011 assessments and 9,905 care plans
Manage own care using the Recovery Package, information and signposting, with remote surveillance for monitoring Ability to participate in some self care but need intervention and support additional to Recovery Package and remote surveillance Complex management and ongoing treatment by MDT professionals
Macmillan Cancer Support. 2011. The importance of physical activity for people living with and beyond cancer: A concise evidence review
By March 2017, NHS England will agree an approach for collecting data on long-term quality of life, including assessing the role of Patient Reported Outcome Measures. This approach will be tested during 2017 for national roll out from 2018. By March 2017, NHS England, though Cancer Alliances, will drive the spread of riskstratified follow up pathways for breast cancer, including assessing the role of commissioning incentives to encourage implementation. In subsequent years, they will be rolled out to other cancer types NHS England and partners will review good practice in approaches to reducing and managing long term consequences of treatment in order to produce improved guidance to the system to encourage spread and adoption of cost effective practice commencing 2017. In 2017/18, NHS England will pilot the use of the Holistic Needs Assessment as a means of better management of the transition between phases of the patient pathway including ensuring timely access to palliative care
The inclusion of a quality of life metric in the Cancer Dashboard will lead to: Greater NHS focus on how well people live after treatment rather than just how long they live. Commissioners having access to data detailing the level of need in their area and benchmarking with other areas/providers. Data collection in health care settings could help shift the balance of patient/clinician conversations to include what matters most to patients. Once the quality of life metric has been embedded in the Cancer Dashboard for some time, and data has been collected over several years the expected benefits are: Supporting the development and evaluation of services. Measure whether an overall population level improvement in quality of life has occurred over time. More informed decision making patients able to assess quality of life alongside survival benefits. Commissioners and providers able to make comparisons between the quality of different treatments and services. The ability to hold providers and commissioners to account when services are poor. Quality of life data could improve understanding of the economic value of different care models and treatments.