Treatable but not curable cancer in England: a retrospective cohort study using cancer registry data and linked data sets

Abstract

Objectives: This study estimates the prevalence of cancers that are categorised as treatable but not curable (TbnC) in England. It provides a quantification of the population and a framework to aid identification of this group to enable the design of tailored support services.

Design: Through consultation with clinical and data experts an algorithmic definition of TbnC was developed. Using cancer registry data sets, with five other linked data sets held by the National Disease Registration Service, the algorithm was applied as part of this retrospective cohort study to estimate the size and characteristics of the TbnC population.

Setting and participants: The health data records of 1.6 million people living with cancer in England in 2015, following a cancer diagnosis between 2001 and 2015, were retrospectively assessed for TbnC status.

Results: An estimated 110 615 people in England were living with TbnC cancer at the end of 2015, following identification of TbnC cancer between 2012 and 2015. In addition, 51 946 people fit the initial search criteria but were found to have been in their last year of life at the end of 2015 and therefore considered separately here as end of life cases. A further 57 117 people in England were initially identified as being at high risk of recurrence or having their life being shortened by cancer but did not fit the TbnC conceptual framework and were excluded, but their results are also reported under 'group B'.

Conclusions: A population living with TbnC cancer can be identified using data currently collected on a national scale in England. This large population living with TbnC cancer requires personalised treatment and support.

Keywords: health policy; oncology; public health.

Figure 1

Concept development flow diagram; a summary of the path from concept development to the TbnC algorithm and results of this analysis. TbnC, treatable but not curable

Figure 2

Data flow diagram summarising the steps undertaken during a run of the algorithm used to quantify TbnC cases. CWT, National Cancer Waiting Times Monitoring;HES, Hospital Episodes Statistics; RTDS, radiotherapydata set;SACT, systematic anti-cancertherapy;TbnC, treatable but not curable.

Figure 3

2015 Prevalence of TbnC cancer in England. (A) Prevalence number of TbnC cancer in England in 2015, 110,615 people living with TbnC cancer and not in their last year of life (TbnC, not EoL), with an additional 51 946 in their last year of life (TbnC, EoL). There were also 45 952 and 11 175 people in group B who were not and were in their last year of life, respectively (group B, not EoL; group B, EoL). (B) Cancer type breakdown of the TbnC and group B prevalence numbers, mapping along the same four groups as in (A) specific cancer type breakdowns within groups are shown. (C) Stage at diagnosis breakdown of the TbnC and Group B prevalence numbers, mapping along the same four groups as in (A) specific cancer stage at diagnosis breakdowns within groups are shown. 1—lung, trachea and bronchus, 2—secondary malignant neoplasms, 3—non-Hodgkin’s lymphoma and non-follicular lymphoma. EoL, end of life;TbnC, treatable but not curable. (CLL - Chronic lymphocytic leukemia, CML - Chronic myeloid leukaemia)

Figure 4

Timing and age in the TbnC cohort. For the 110 615 TbnC not EoL cases, each person level record is defined by the earliest criteria met, however multiple criteria may have been met; (A) breakdown of the time from initial diagnosis to meeting of first TbnC criteria for the TbnC not EoL cases. The total for all 11 615 cases is show, along with the top five with the largest gap. (B) Population pyramid of the 110 616 TbnC not EoL cohort. Age at time of meeting first TbnC criteria. EoL, end of life;TbnC, treatable but not curable.

Figure 5

The relationships between the criteria. For the 110 615 TbnC not EoL cases, each person level record is defined by the earliest criteria met, however, multiple criteria may have been met; (A) event level records showing the occurrence of each criterion across the four groups—note: people are counted multiple times if meeting multiple criteria. (B) Percentage of the groups meeting two or more criteria; ‘TbnC—not EoL’ group (upper left) and the other three groups as in Fig 2a. (C) Breakdown of number of criteria met by each person in the ‘TbnC—not EoL’ group. (D) Cancer type breakdown of the TbnC 2015 incidence numbers—note: people are counted multiple times if meeting multiple criteria (group B not included). 1—lung, trachea and bronchus, 2—non-Hodgkin’s lymphoma and non-follicular lymphoma. (CLL - Chronic lymphocytic leukemia, CML - Chronic myeloid leukaemia)