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Frequently asked questions

What is cancer prevalence and where is the data from?

We use the term ‘cancer prevalence’ for the number of people who have been diagnosed with cancer in the past and who are still alive, on a given date. The date we use here is 31 December 2015. We present 21-year prevalence, which is the number of people still alive who were registered with a cancer diagnosis within the 21-year period 1995-2015, in England.

The cancers included are:

  • All cancers: all malignant cancers excluding non-melanoma skin cancer (NMSC) (ICD10 codes C00-C97, excluding C44).
  • Breast (female): C50
  • Prostate: C61
  • Lung (trachea, bronchus and lung): C33-34
  • Colorectal (bowel) cancer (colon, rectosigmoid junction, rectum and anus): C18-20

Data on the prevalence of other cancers as well as by age, ethnicity, deprivation and stage at diagnosis in your CCG is available from the NCRAS website .

Cancer prevalence figures have been calculated by counting the number of people diagnosed with cancer in the given period, based on the information collected by cancer registries and using the National Cancer Data Repository (NCDR). If a person died or left the country in the given period (1995-2015), or were aged over 99 at diagnosis or over 105 at the end of 2015, they were removed from the study.

Analysis for all malignant neoplasms combined, are based on the first cancer diagnosed in each person, within the period of the study. This approach aligns with the methods used to estimate the 'two million' people living with or beyond a cancer diagnosis in UK (Maddams et al., 2009).

The cancer type data is based on first diagnosis of each specific cancer - for example, if a person were diagnosed with lung cancer in 1995 and colorectal cancer in 2005, they would be included in counts for both lung and colorectal cancers. If that person was diagnosed with lung cancer in 1995 then with lung cancer again in 1997, that person would be counted only once in lung cancer, based on their first lung cancer diagnosis in 1995.

The numbers in this analysis may not agree with those published elsewhere due to slight differences in methodologies, data extraction methods, periods of observation, datasets, and rounding.

Data is also available on people alive in 2013 with a cancer diagnosis any time in the past (complete prevalence). Unfortunately, this just gives information for all of England combined, rather than by CCG. It is available to download (Excel file) from the National Cancer Intelligence Network website.   

Sources:

PHE National Cancer Registration and Analysis Service (NCARS), Macmillan Cancer Support and Transforming Cancer Services Team for London, NHS. 2018. Cancer Prevalence in England - 21-year prevalence by demographic and geographic measures.   Available from the NCRAS website.

Maddams J, Brewster D, Gavin A, et al. 2009. Cancer Prevalence in the United Kingdom: estimates for 2008. Br J Cancer 2009; 101(3):541–547.

This prevalence information was created as part of the Macmillan and the National Cancer Registration and Analysis Service (NCRAS) partnership. The partnership aims to develop robust data analysis and insight, which increases our understanding of the UK cancer survivorship population and helps make personalised care a reality.

Find out more about the Macmillan-NCRAS partnership.

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Why is prevalence important?

Cancer prevalence statistics are essential for understanding the number of people who have previously received a diagnosis of cancer and their need for care. Some people will be receiving active treatment for their cancer, some may be recovering from cancer and readjusting to life after treatment and others may be living with the on-going consequences of their cancer and its treatment.

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How have future prevalence estimates been calculated?

Our future CCG prevalence estimates are the estimated number of people who might be living up to 21 years with a cancer diagnosis prior to the projection date (e.g. 21-year prevalence in 2030 is the number of people diagnosed between 2010 and 2030 who are alive at the end of 2030).

Future estimates for CCGs are crude and based on Maddams et al. (2012) future cancer prevalence projections for the UK. The future estimates take into account how many people were alive at the end of 2015 who had been diagnosed with cancer in the period 1995-2015, by CCG. Then UK-level future estimated trends have been applied to these locality data, based on two of the four scenarios used by Maddams et al. (2012):

  • Scenario 1: assumes existing trends in incidence and survival will continue in the future (except for prostate cancer), together with the continued growth and ageing of the general population. This was considered to be the most empirically based scenario by the authors.
  • Scenario 2: assumes age- and sex-specific incidence and survival remain constant (2008 to 2030). The growth in prevalence is therefore driven by growing and changing population demographics only. This was considered by the authors to be the most conservative scenario.

Maddams et al. (2012) growth rates used for UK total prevalence (i.e. all people currently alive who have been diagnosed with cancer, not just for a 21-year period) are then applied to each CCG's 21-year prevalence figure, thus assuming that the rate of change for all CCGs is the same as for the UK and for complete prevalence. Future CCG estimates are not adjusted for local differences and changes in the age structure, size and movement of the local population; cancer type profiles and trends; trends in risk factors and the possibility of future advances in screening and treatment regimes. Estimates are indicative only, but aim to provide an estimate of the number of people living with cancer for CCGs in both the short- and long-term.

Data is also available on people alive in 2013 with a cancer diagnosis any time in the past (complete prevalence). Unfortunately, this just gives information for all England combined, rather than by CCG. Available from the NCRAS website.

Sources:

PHE National Cancer Registration and Analysis Service (NCARS), Macmillan Cancer Support and Transforming Cancer Services Team for London, NHS. 2018. Cancer Prevalence in England - 21-year prevalence by demographic and geographic measures.   Available from the NCRAS website.

Maddams J, Utley M, Møller H. 2012. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.

Maddams J, et al. Cancer prevalence in the United Kingdom: estimates for 2008. Br J Cancer 2009; 101: 541-547.

 

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How accurate can you be at predicting future prevalence?

Predicting future prevalence data is difficult, particularly as there is limited data currently available for the newly-created CCGs and their resident populations. The CCG future prevalence estimates provided here are therefore based on crude calculations and provide proxy numbers. Future estimates will naturally change over time, as more data is available.

We provide these estimates to give an indication of how your local population might grow and reflect two possible future scenarios as noted in the FAQ above.

However, there are some limitations to predicting future trends, while a number of assumptions need to be made in order to make any future estimates. Key points are noted below.

Our CCG estimates are based on:

  • The projections calculated by Maddams et al (2012) for the UK. Therefore, our estimates do not take into account unknown factors that may happen in the future e.g. factors that influence cancer incidence (e.g. smoking rates, screening programmes, risky lifestyles) or outcomes (e.g. new treatments, changes in access to care).
  • Applying UK-wide projections of prevalence to CCG 21-year prevalence figures for 2015 (i.e. assuming the rate of change in the UK will be the same for each CCG). Therefore they do not take into account differences in the CCG populations and how these may evolve over time. For example, if a CCG population ages or grows faster than the UK overall, or if it is more or less socio-economically deprived relative to the rest of the UK, this would affect the future estimate for that CCG presented here.
  • Where people lived at the time of their diagnosis, not where they live now or in the future – so the future estimations do not take into account population movement since time of diagnosis or in the future.

Despite these caveats, these data can be used to influence planning as there is a clear indication that the cancer population is going to increase. As such, long-term planning will need to cater for a larger, older and, most likely, a more complex cancer population i.e. potentially with more comorbidities and needs than today.

Sources:

PHE National Cancer Registration and Analysis Service (NCARS), Macmillan Cancer Support and Transforming Cancer Services Team for London, NHS. 2018. Cancer Prevalence in England - 21-year prevalence by demographic and geographic measures.   Available from the NCRAS website.

Maddams J, Utley M, Møller H. 2012. Projections of cancer prevalence in the United Kingdom, 2010-2040. Br J Cancer 2012; 107: 1195-1202.

 

What does living with cancer mean for a patient and why is time since diagnosis helpful?

The cancer prevalence numbers are defined as the number of people who are currently alive and have had a cancer diagnosis in the past - in this case for people diagnosed in the 21-year period 1995-2015. For some of these people the cancer will be influencing most aspects of their lives while for others the impact will be less acute.

The cancer prevalence data is provided for the total 21-year period and by periods of time after first diagnosis: 0-1 years, 1-2 years, 2-5 years, 5-10 years, 10-15 years and 15-21 years'.

In the England, the study shows around 1.8 million people are living with and beyond cancer, having had a cancer diagnosis in the 21-year period between 1995 and 2015. Of these, 11.8% (around 210,992) were diagnosed at the start of the period, between 1995 and 2000, so have been living with and beyond cancer for 15 to 21 years after their first diagnosis in that period. Of the more recently diagnosed, 11.6% (around 208,273) have been living with cancer for up to one year.

Segmenting the prevalent cancer population in this way provides an insight into how many people have recently been diagnosed with cancer, and how many are longer term survivors. The total prevalence figures for the 21-year period are a useful indicator of the burden of cancer. However, patient needs and experiences will vary over time after diagnosis. Segmenting the prevalent population by time since diagnosis can therefore help to inform health care service planning, for the needs of people living with and beyond cancer at different time periods on their pathway.

The data for the whole of the UK for all cancers is available here: National Cancer Registration and Analysis Service (NCRAS) 2013. Macmillan-NCIN work plan - NCIN. 2014. Macmillan- work plan - Segmenting the cancer population: All cancers combined and top four cancer type by CCG, 20-year prevalence at the end of 2010, England.

PHE National Cancer Registration and Analysis Service (NCARS), Macmillan Cancer Support and Transforming Cancer Services Team for London, NHS. 2018. Cancer Prevalence in England - 21-year prevalence by demographic and geographic measures.   Available from the NCRAS website.

Macmillan, TCST and NCRAS work in partnership on, ‘The UK Cancer Prevalence Project’. This project has run for a number of years’ and aims to breakdown, or ‘segment’, information on the UK cancer population.

See outputs for all years from the Macmillan-NCRAS work plan.

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Why is prevalence rising?

The increase in prevalence is a function of the growing and ageing population alongside the increasing number of people being diagnosed with and surviving cancer. The growth in cancer incidence and survival is due to the following main factors:

  • An ageing population: life expectancy is increasing, with more elderly people alive today than ever before. Cancer is primarily a disease of older people. Hence there are more people being diagnosed with cancer.
  • A greater focus on early diagnosis.
  • Advances in cancer treatments.
  • Changing lifestyle risk factors: for example, increases in obesity rates.

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