Welsh Cancer Intelligence and Surveillance Unit, Public Health Wales

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2 Project team Dr Dyfed Wyn Huws, Dr Ceri White, Rebecca Thomas, Tamsin Long, Ciarán Slyne, Julie Howe, Helen Crowther Acknowledgements A special thanks to all the Welsh Cancer Intelligence and Surveillance Unit s staff, especially the registration team without whom the data used within this report would not be produced. Thanks to the following people for their help with this publication: Dr Kate Brain, Dr Clare Elliot, Dr Judith Greenacre, Dr Ciarán Humphreys, Professor Richard Neal, Isabel Puscas, Hannah Thomas and Janet Warlow Definitions Age-standardised rates and EASR Age-standardisation adjusts rates to take into account how many old or young people are in the population being looked at. When rates are age-standardised, you know that differences in the rates over time or between geographical areas do not simply reflect variations or changes in the age structure of the populations. This is important when looking at cancer rates because cancer mainly affects older people. Throughout this report we use European Age Standardised Rates (EASR) using the 2013 European Standard Population (ESP) unless otherwise specified. Statistical significance If a difference between rates or survival between populations is statistically significant, it means that that difference is unlikely to have occurred due to chance alone, and that we can be more confident that we are observing a true difference. In this report we use the conventional arbitrary cut-off of less than a 5% chance to mean statistically significant. Just because a difference is statistically significant doesn t necessarily mean that it is large or important - that can depend on our judgement and other things. Relative Survival This is a way of comparing the survival of people who have a specific disease in our case, cancer - with the survival experienced by the general population, over a certain period of time. It is calculated by dividing the percentage of patients with the disease who are still alive at the end of the period of time (e.g. one or five years after diagnosis) by the percentage of people in the general population of the same sex and age who are alive at the end of the same time period. The relative survival rate shows whether the disease shortens life. We use relative survival in this report. Publication Details Title: Lung Cancer in Wales - Lung cancer survival and survival by stage Date: 28 January 2015 ISBN: Contact: 16 Cathedral Road Cardiff CF11 9LJ wcu.stats@wales.nhs.uk Website: Public Health Wales NHS Trust Material contained in this document may be reproduced without prior permission provided it is done so accurately and is not used in a misleading context. Acknowledgement to Public Health Wales NHS Trust to be stated. Copyright in the typographical arrangement, design and layout belongs to Public Health Wales NHS Trust. 2

3 Contents Summary... 4 Key findings Why prioritise lung cancer? Lung cancer survival in Wales and the rest of the Europe Lung cancer survival trends in Wales How is area deprivation related to survival? Survival in different lung cancer types Variation in lung cancer by stage at diagnosis Health board populations and lung cancer survival Explaining variations and inequalities in survival References

4 Summary Lung cancer is one of the four most common cancers in Wales and the commonest cancer worldwide. Each year in Wales, lung cancer is responsible for more deaths than bowel and breast cancers combined. Survival from lung cancer is poor compared to most other common cancers. Around half of all people with lung cancer in Wales die from the disease within six months of diagnosis, almost three-quarters within a year. Almost a third of women in Wales survive at least one year, only a quarter of men do so a mere 6.5 per cent of people survive for five years or more. Survival in Wales is almost the lowest in Europe 28th out of 29 countries in the Eurocare study. If the best lung cancer survival in the Eurocare study applied in Wales during 2012, an approximate estimate of well over 340 more people might have survived at least a year, and over 190 more people might survive at least five years. One-year lung cancer survival in Wales is consistently the lowest of all UK countries for men and women the slight increases since 1999 are the smallest in the UK, although there was a decrease for men in Northern Ireland. Survival dramatically decreases with increasing age. One-year survival in the year-old group is almost twice that in the 75+ age group in Wales, although most cases occur between ages 65 to 79. Lung cancer stage at diagnosis is strongly related to one-year survival. Lung cancer can be cured or survival improved if it is diagnosed early, although many other factors play a part in addition to early diagnosis. Overall, survival varies little by area deprivation, unlike the wide inequalities in incidence, but the survival by stage at diagnosis does vary by area deprivation. For potentially treatable stage 1 lung cancer one-year survival is 91 per cent in the least deprived areas of Wales but is only 74 per cent in the most deprived areas. There are other inequalities. There is a seven percentage point difference in survival between health board residents with the highest (Betsi Cadwaladr) and lowest (Aneurin Bevan) one-year lung cancer survival for And residents of Cwm Taf have the highest stage 1 one-year survival (86.2 per cent) - over eight percentage points higher than stage 1 survival for Wales, and almost 15 percentage points higher than the lowest health board population (Cardiff and Vale). In conclusion, poor lung cancer survival in Wales appears to be due to a number of factors that need to be better understood, mapped and quantified. There are inequalities and variations within Wales and compared with the rest of the UK and many other European countries. Earlier diagnosis across the population is needed and may be possible, but this is limited by the lack or type of lung cancer symptoms. Once someone presents to the NHS in Wales with a suspicion 4

5 of lung cancer there may be key issues that lie along the patient s pathway, including: - a low surgical resection rate of early stage patients - too many patients presenting as emergencies - variations in lung cancer staging practices - GPs and patients delaying referral - GP access to specialist advice - waiting times for x-rays Our ageing population and higher prevalence of other illnesses may also play a part. We will be examining some of these issues later in our series of reports on lung cancer in Wales. Finally, lung cancer can be prevented. Smoking accounts for around 36 cases per week in Wales, mainly in smokers but also in non-smokers. Around 9 cases per week can be linked to other factors such as radon, asbestos, particulate air pollution and occupational exposure, and silicosis, again in smokers and in nonsmokers. The risk from radon and asbestos is greatly multiplied by the addition of smoking. Effective population-level measures exist to control tobacco and most of the other risk factors. 5

6 Key findings 1. Why prioritise lung cancer? Lung cancer is one of the four most common cancers in Wales and the commonest cancer worldwide. There were 2,370 new cases diagnosed in Wales during 2012, equivalent to around 45 cases each week, and accounting for 13 per cent of all new cancer cases. Lung cancer is the third most common cancer in men, and the second most common cancer in women in Wales. The number of new cases in women is approaching the number in men. We estimate that for 2012, Wales women had the third highest incidence rate of 40 European countries. Lung cancer can be prevented. Smoking accounts for around 36 cases per week in Wales, mainly in smokers but also in non-smokers. Around 9 cases per week can be linked to other factors such as radon, asbestos, particulate air pollution and occupational exposure, and silicosis, again in smokers and in non-smokers. The risk from radon and asbestos is greatly multiplied by the addition of smoking. Effective population-level measures exist to control tobacco and most of the other risk factors. Each year in Wales, lung cancer is responsible for more deaths than bowel and breast cancers combined. 2. Lung cancer survival in Wales and the rest of Europe Lung cancer has a very low survival rate Survival from lung cancer is poor compared to most other common cancers. Around half of all people with lung cancer in Wales die from the disease within six months of diagnosis, almost three-quarters within a year. Lung cancer can be cured or survival improved if it is diagnosed early, although many other factors play a part in addition to early diagnosis. Survival in Wales is almost the lowest in Europe Wales had the 28th lowest lung cancer one-year and five-year survival rates in both men and women of 29 countries in the Eurocare study. If the European average lung cancer survival in the Eurocare study applied in Wales during 2012, an approximate estimate of o o o over 120 more women might have survived at least a year about 135 more men might have survived at least a year over 65 more women might survive at least five years 6

7 o about 50 more men might survive at least five years If the best lung cancer survival in Europe in the Eurocare study applied in Wales during 2012, an approximate estimate of o o o o well over 155 more women might have survived at least a year well over 185 more men might have survived at least a year over 113 more women might survive at least five years about 77 more men might survive at least five years One-year lung cancer survival in Wales is consistently the lowest of all UK countries for men and women the slight increases since 1999 are the smallest in the UK, although there was a decrease for men in Northern Ireland During all periods between 1999 and 2009, one-year lung cancer survival rates in Wales remained the lowest of all the UK countries for both men and women, but the differences were small. Although one-year survival increased by only a few percentage points across the UK countries for women, the smallest absolute increase was in Wales. One-year survival in men increased across the UK, except for a decrease in Northern Ireland of the increases, Wales had the smallest. There was little improvement in five-year survival across UK countries between 1999 and it remains very low in all the countries, although Northern Ireland has the highest for men and women, but with little difference between the other countries. 3. Lung cancer survival trends in Wales Almost a third of women in Wales survive at least one year, only a quarter of men do so a mere 6.5 per cent of all survive for five years or more Most people with lung cancer die within the first year after diagnosis or are diagnosed at the time of death. Only 28 per cent of people diagnosed with lung cancer in Wales during 2007 to 2011 survived at least a year. Of people diagnosed between 2003 and 2007, a mere 6.5 per cent survived for five years or more. There was an increase in one-year survival in both sexes from 2000 to 2011, but the size of the absolute increase in women was over one and a half times that in men so that most recently almost a third of women survive at least one year, but only a quarter of men do so. 7

8 There was almost no increase in five-year survival from 2000 to 2007 in either men or women, although the survival in women remained slightly higher than men. Survival dramatically decreases with increasing age There is a clear pattern of decreasing one-year and five-year survival with increasing age. One-year survival in the year-old group is almost twice that in the 75+ age group, although most cases occur between ages 65 to 79. There has been a gradual improvement in one-year survival in all age groups. One-year survival is lower in men than women for all age groups - the difference is largest in the year-old age group (9.8 percentage points), and smallest in the 75+ age group (2.6 percentage points) in How is area deprivation related to survival? Overall, survival varies little by area deprivation, unlike the wide inequalities in incidence, but the survival by stage at diagnosis does vary by area deprivation The relationship of survival from lung cancer with deprivation is different to that of incidence, with little or no gradient in overall one-year or five-year survival as area deprivation increases. However, survival does vary by area deprivation for different lung cancer stages at diagnosis (see below). 5. Survival in different lung cancer types One-year survival from non-small cell lung cancer is higher than small cell lung cancer, but the difference is small In men, small cell lung cancer one-year survival has been consistently lower than non-small cell. In women, small cell one-year lung cancer survival is now lower than nonsmall cell, but was previously higher than it. Women s one year survival from small cell lung cancer is higher than both non-small cell and small cell in men. There have been smaller improvements in one-year small cell survival compared to non-small cell for men and women. Five-year survival is poor in both types, but is worse for small cell than nonsmall cell in men and women. 8

9 Whereas most recently, five-year survival for non-small cell lung cancer is higher in women than men, the opposite is true for small cell lung cancer, although in small cell survival was higher in women. 6. Variation in lung cancer by stage at diagnosis Lung cancer stage at diagnosis is strongly related to one-year survival One-year survival for stage 1 disease (78 per cent) is approximately fiveand-a-half times that from stage 4 disease (14 per cent). One-year survival is modestly higher for women than men for all stages apart from stage 2 where survival is more similar, but slightly higher in men. For potentially treatable stage 1 disease one-year survival is 23 per cent higher in the least deprived areas compared to the most deprived For stage 1 disease although almost three-quarters survive at least one year in the most deprived areas of Wales, there is a steep gradient with 91 per cent surviving in the least deprived areas that is 23 per cent or 17 percentage points higher. There is a ten percentage point variation for stages 2 and 3 also, but no clear gradient moving from most to least deprived areas. 7. Health board populations and lung cancer survival The highest health board one-year survival rate is for the Betsi Cadwaladr population - the only one statistically significantly higher than Wales survival with no health board significantly lower There is a modest seven percentage point difference in survival between health board residents with the highest (Betsi Cadwaladr) and lowest (Aneurin Bevan) one-year lung cancer survival ( ). The highest survival in Betsi Cadwaladr (34.7 per cent) is the only one that is statistically significantly higher than the one-year survival for Wales (30.9 per cent), and no health board is statistically significantly lower. When each stage at diagnosis is considered separately wider differences in one-year survival between health board area of residence are apparent. Residents of Cwm Taf have the highest stage 1 one-year survival (86.2 per cent) - over eight percentage points higher than stage 1 survival for Wales, and almost 15 percentage points higher than the lowest (Cardiff and Vale). 9

10 8. Explaining variations and inequalities in survival Poor lung cancer survival in Wales appears to be due to a number of factors that need to be better understood, mapped and quantified. They Possibly include: - a low surgical resection rate of early stage patients - too many patients presenting as emergencies - variations in lung cancer staging practices - GPs and patients delaying referral - GP access to specialist advice - waiting times for x-rays Our ageing population and higher prevalence of other illnesses may also play a part. We will be examining some of these issues later in our series of reports on lung cancer in Wales. Presentation at an earlier stage is one predictor of improved survival the survival rates by stage for Wales show this with survival rapidly decreasing in later stages. As in most other countries, the majority of people diagnosed with lung cancer in Wales present at a late stage a major factor in the overall low survival from lung cancer. One explanation for the predominance of late presentation is the natural history of the disease - it can move from stage 1 to 4 very quickly and without treatment even stage 1 disease can be rapidly fatal. Symptoms tend to be absent, non-specific, or have little relationship to disease stage. The International Cancer Benchmarking Partnership (ICBP) 1 study showed the proportion diagnosed at an early stage for non-small cell lung cancer was slightly lower in the UK and Denmark compared to Australia, Canada, Norway and Sweden. All had the majority of cases diagnosed at a later stage. Similarly, within Wales the variation in stage at diagnosis between health board populations is not very wide. Reasons for Welsh patients presenting slightly later than elsewhere are not entirely understood. The ICBP 2 study showed that in Wales and the rest of the UK, people are more likely than people in Australia, Canada, Denmark, Norway and Sweden to say that embarrassment and not wanting to waste the doctor s time would stop them going to the doctor with a possible cancer symptom. Yet most people in the UK and Wales held positive views about cancer, for example the benefits of early diagnosis and improved cancer outcomes. However, negative beliefs about cancer, such as cancer is a death sentence, were prevalent among people with lower levels of education or living in deprived areas of Wales. There is evidence that negative beliefs may be linked to delayed presentation. 10

11 Once patients present to primary care, other reasons for slightly later stage at diagnosis in Wales may lie at the GP and hospital care boundary along with access to diagnosis. The ICBP 3 study (about to be published) showed that GPs in Wales, compared with those in other UK countries and Canada, Australia and Scandinavia, opted to investigate potential symptoms of lung cancer at a later stage. They also reported longer waiting times for x-rays, poorer access to specialist advice, and less ability to hasten tests if cancer is suspected. If stage at diagnosis was the only major factor affecting survival then areas or countries with different stage distributions - and so different overall lung cancer survival - should still expect survival for each stage to be similar. But there is wide variation in survival by stage between Welsh health board populations and between countries, as shown in the ICBP 1 study - UK survival figures were among the lowest at all stages compared to the other countries. Add to that stage distribution varies little between them but there is wide variation in overall survival, then factors other than stage distribution must play a part. The point of access to the NHS at the time of diagnosis appears to be a factor, over and above the stage at diagnosis. Around half the people diagnosed with lung cancer present as an emergency and have worse outcomes than other routes into the NHS in Wales. This proportion of emergencies is higher than in England. One of the major issues in relation to survival is timely access to potentially curative treatment for people with early stage disease if they wish and are suitable. This may include surgery, radiotherapy or chemotherapy, depending on cancer type. UK countries have low surgical resection rates compared to some other European countries. Wales has a significantly lower surgical resection rate than either England or Scotland. It is not clear why this is, but other existing illnesses (co-morbidity), general health, surgery not being offered to older people, patient choice or access to and capacity of specialist surgical services may all play a part, as well as differences in staging practices. An ICBP team is examining the effect of access to treatment on the international variation in survival rates. We are participating in the ICBP 5 study to examine the contribution of co-morbidity. 11

12 1 Why prioritise lung cancer? Lung cancer is one of the four most common cancers in Wales and the commonest cancer worldwide. There were 2,370 new cases diagnosed in Wales during 2012, equivalent to around 45 cases each week, and accounting for 13 per cent of all new cancer cases. Lung cancer is the third most common cancer in men, and the second most common cancer in women in Wales. The number of new cases in women is approaching the number in men. We estimate that for 2012, Wales women had the third highest incidence rate of 40 European countries 1. Lung cancer can be prevented. Smoking accounts for around 36 cases per week in Wales, mainly in smokers but also in non-smokers. Around 9 cases per week can be linked to other factors such as radon, asbestos, particulate air pollution and occupational exposure, and silicosis, again in smokers and in non-smokers. The risk from radon and asbestos is greatly multiplied by the addition of smoking. Effective population-level measures exist to control tobacco and most of the other risk factors. Each year in Wales, lung cancer is responsible for more deaths than bowel and breast cancers combined. 12

13 2 Lung cancer survival in Wales and the rest of Europe Lung cancer has a very low survival rate Survival from lung cancer is poor compared to most other common cancers. And survival from lung cancer in Wales is almost the lowest in Europe. At present around a half of the people diagnosed with lung cancer in Wales die from the disease within six months of diagnosis, almost three-quarters within a year (figure 1). Figure 1: Kaplan- Meier survival curve for lung cancer in Wales Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry Lung cancer can be cured or survival improved if it is diagnosed early, although many other factors play a part in addition to early diagnosis. Unfortunately most people are diagnosed at a late stage. There are many reasons for this although more research is needed to fully understand why. We discuss this further at the 13

14 end of this report. Research evidence is emerging on what is effective in improving earlier diagnosis and improving survival. Potentially curative or survival-prolonging treatments include surgery, radiotherapy or chemotherapy depending on cancer type and many other factors. Some of these and other interventions may also be used for palliative purposes in many people with lung cancer. Survival in Wales is almost the lowest in Europe Survival from lung cancer is universally low across Europe but there is still wide variation between countries. The highest one-year survival rate amongst men is in Belgium which is almost twice as high as the lowest in Bulgaria(figure 2). We take part in the Eurocare 2 study which showed that for the 29 European countries studied, Wales had the 28 th lowest lung cancer one-year and five-year survival rates in both men and women (figures 2 to 5). Figure 2: Men s one-year lung cancer survival in Wales is 28 th lowest out of 29 European countries Source: Eurocare 14

15 Figure 3: Women s one-year lung cancer survival in Wales is 28 th lowest out of 29 European countries Source: Eurocare The Eurocare study showed that one-year relative survival for women in Wales was 27 per cent lower than the European average or over 11 percentage points less. It was a third (or 15 percentage points) lower than Austria, the country with a national cancer registry that had the best survival. If the European average survival applied in Wales, then using our latest figures, over a 120 more women with lung cancer diagnosed in 2012 might have survived at least a year. And if the best survival applied that could mean well over an extra 155 surviving at least a year. The one-year survival for men in Wales was lower than women, in common with the other countries in the Eurocare study. It was 29 per cent - or 11 percentage points - lower than the European average for men. It was almost 36 per cent - or 15 percentage points - lower than Austria, the country with a national cancer registry that had the best survival for men. If the European average survival applied in Wales, then using our latest figures, about 135 more men with lung cancer diagnosed in 2012 might have survived at least a year. And if the best survival applied that could mean well over an extra 185 surviving at least a year. A similar pattern is seen for five-year survival, although the differences are even greater. Survival in Wales is over a third lower than the European average in men, but for women in Wales five-year survival from lung cancer is 40 per cent lower than the European average. Survival of men in Wales is just over half that of Austria, the country with a national cancer registry with the highest and less than half that of Austria for women. 15

16 Figure 4: Men s five-year lung cancer survival in Wales is 28 th lowest out of 29 European countries Source: Eurocare Figure 5: Women s five-year lung cancer survival in Wales is 28 th lowest out of 29 European countries Source: Eurocare 16

17 If this European average five-year survival for women applied in Wales, using our latest figures, over 65 more women with lung cancer diagnosed in 2012 might have survived at least five years. And if the best survival applied, that could mean more than an extra 113 surviving at least five years. If this European average five-year survival for men applied in Wales, using our latest figures, about 50 more men with lung cancer diagnosed in 2012 might have survived at least five years. And if the best survival applied that could mean about 87 extra men surviving at least five years. Although survival is not as high as in Austria, Sweden is another country with a high quality national cancer registry that is consistently higher than the European average one-year and five year survival rates, for both men and women. Belgium, Switzerland, France, Germany and Italy consistently feature above the European average survival, but they have numerous regional registries that may not have whole population coverage. The International Cancer Benchmarking Partnership module 1 study 3 found that international differences in lung cancer survival were wider in older age groups. One-year lung cancer survival in Wales is consistently the lowest of all UK countries for men and women the slight increases since 1999 are the smallest in the UK, although there was a decrease for men in Northern Ireland One-year survival from lung cancer increased for women in all UK jurisdictions between 1999 and 2009 i (figure 6). It also increased for men in all the UK jurisdictions except for Northern Ireland, which decreased slightly. For women, the largest absolute increase in one-year survival occurred in Northern Ireland (4.7 percentage points), and the smallest was in Wales (2.3 percentage points). For men, the largest increase was in Scotland (3.1 percentage points), and the lowest increase was again in Wales (2.4 percentage points), although there was also the small decrease in Northern Ireland (-0.19) percentage points). Most recently during the period we examined, women in Northern Ireland and Scotland had similar one-year survival rates which are the highest of UK jurisdictions. For women, Wales had the lowest survival with a widening gap between the other jurisdictions. Scotland had the highest one-year survival for men even higher than for Wales women. The lowest survival of all was amongst men in Wales, but the absolute difference with Scotland s men was still small (3.5 percentage points by the end of the period). During the whole of this period, one-year lung cancer survival rates in Wales remained the lowest of all the UK jurisdictions for both men and women (figure 6). i Latest comparable years for all UK jurisdictions 17

18 Figure 6: Trends in one year survival for lung cancer in the United Kingdom. Source: UKCIS 4.5b: April 2013 update There was little improvement in five-year survival across the UK between 1999 and 2005, and it remains very low in all UK jurisdictions (figure 7). Women in Northern Ireland have the highest five-year survival rate. Women in England, Scotland and Wales have very similar rates for the latest period, with most improvement in Scotland. Although men in Wales remain with the lowest five-year survival, the difference with England and Scotland is small, and it improved slowly by similar amounts in Wales and England. Meanwhile, five-year survival decreased slightly in men Northern Ireland and Scotland. 18

19 Figure 7: Trends in five year survival for lung cancer in the United Kingdom. Source: UKCIS 4.5b: April 2013 update 19

20 3 Lung cancer survival trends in Wales Almost a third of women in Wales survive at least one year, only a quarter of men do so a mere 6.5 per cent of all survive for five years or more More recent survival data is available for Wales than the comparative UK figures. Most people with lung cancer die within the first year after diagnosis or are diagnosed at the time of death (figure 8). Only 28 per cent of people diagnosed with lung cancer in Wales during 2007 to 2011 survived at least a year. Of people diagnosed between 2003 and 2007, a mere 6.5 per cent survived for five years or more. There has not been much improvement in lung cancer survival in Wales. Although one-year survival improved by almost a fifth between 2000 and 2011, this was only equivalent to 4.5 percentage points. Survival in women is higher than men. There was an increase in both sexes, but the size of the absolute increase in women was over one and a half times that in men, increasing the gap between them. Figure 8: One- year lung cancer survival is increasing very slowly, but improvement is more in women than men. Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry 20

21 Five-year survival from lung cancer is very low and considerably lower than oneyear survival, emphasising the fact that survival from lung cancer is poor and that most deaths are early after diagnosis. There was almost no increase in fiveyear survival from 2000 to 2007 (figure 9) in either men or women, although the survival in women remained higher than men. Figure 9: Hardly any change in five- year lung cancer survival in Wales between Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry Survival dramatically decreases with increasing age A person s age at the time of lung cancer diagnosis is strongly associated with survival. There is a clear pattern of decreasing one-year and five-year survival with increasing age (figures 10 and 11). One-year survival in the year-old group is almost twice that in the 75+ age group, although most cases occur between ages 65 to 79. An improvement in one-year survival has occurred in all age groups, although the numbers are small in the youngest. The lack of clear trends in improvement of five-year survival occurs across all age groups. The ratio of five-year survival in the youngest to oldest age group is larger than for one year survival 21

22 Figure 10: Rapidly decreasing one-year survival with increasing age, but with small improvements in all age-groups Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry Figure 11: Little improvements in five-year lung cancer survival in all age-groups Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry 22

23 One-year survival is lower in men than women for all age groups (figure 12). The gradient of decreasing survival with increasing age is similar for both sexes, with survival being around 1.8 times higher at years compared to 75+ in both men and women. The difference in survival between men and women is largest in the year-old age group (9.8 percentage points), and smallest in the 75+ age group (2.6 percentage points). Figure 12: One-year lung cancer survival is lower in men than women for all age-groups Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry time period. Five-year survival is higher in women than men in all age groups apart from year olds (figure 13), although the latter group is based on very few cases. The gradient of decreasing survival with increasing age is steeper than for oneyear survival in men and women, being steepest in men. Differences between the sexes are smaller than for one-year survival for each age group. 23

24 Figure 13: Five- year survival is generally less in men across age-groups but differences are less than for one-year survival Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry time period. 24

25 Proportion surviving 4 How is area deprivation related to survival Overall, survival varies little by area deprivation, unlike the wide inequalities in incidence, but the survival by stage at diagnosis does vary by area deprivation The incidence of lung cancer is much higher in more deprived areas of Wales compared to the least deprived. The relationship of survival from lung cancer with deprivation is different with little or no gradient as area deprivation increases (figure 14). Figure 14: Kaplan-Meier survival curve for lung cancer in Wales Least deprived Next least deprived Middle deprived Next most deprived Most deprived Survival in years Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry For the latest period ( ) there was almost no gradient in one-year survival between the most and least deprived areas of Wales (figure 15). But during there was a small difference between the least and the most deprived areas of Wales with a gradient in-between. 25

26 Figure 15: The small gradient of decreasing one-year survival with increasing area deprivation in was almost gone by Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry Five-year survival is universally low across all levels of area deprivation with little or no positive or negative relationship to it (figure 16). Figure 16: Small variation in five year survival between different levels of area deprivation has no clear gradient Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry 26

27 5 Survival in different lung cancer types One-year survival from non-small cell lung cancer is higher than small cell lung cancer, but the difference is small The survival profile of non-small cell lung cancer dominates overall lung cancer survival rates as it is far more common than small cell lung cancer. Nevertheless, small cell lung cancer still accounts for 11 per cent of all lung cancer cases in Wales 4 and a detailed knowledge of its survival is important. Small cell lung cancer has a lower one-year survival than non-small cell lung cancer (figure 17). But for the most recent period of the difference between them was only 4.4 percentage points. This gap had widened from only 1.1 percentage points in The pattern is different for men and women. In women at the beginning of the period, one-year survival from small cell lung cancer was actually higher than from non-small cell (figure 17). Survival then increased for both types in women, but by more for non-small cell lung cancer, so that survival was slightly higher than small cell by the latest period. In men survival from small cell lung cancer was worse throughout the period by there was over a six percentage point difference between them. In fact, women s survival from small cell lung cancer was higher than men s survival from non-small cell lung cancer throughout the period. 27

28 Figure 17: One year survival is higher in women than in men for small cell and nonsmall cell lung cancer, the difference is greater for small cell, but women s non- small cell survival is the most improved Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry Five-year survival is poor for both non-small cell and small cell lung cancer, but is worse for small cell in both men and women (figure 18). Whereas five-year survival for non-small cell is higher in women than men, the opposite is by now true for small cell lung cancer. After an initial worsening in small cell survival in women, from it appears to be increasing gradually in both men and women. There is no appreciable improvement in nonsmall cell five-year survival in either men or women. We participate in the International Cancer Benchmarking Partnership (ICBP) studies. The first module looked at survival from lung cancer by type diagnosed in six countries UK, Australia, Canada, Denmark, Norway and Sweden. One-year small cell and non- small cell lung cancer survival varied widely between the countries. Survival from non- small cell lung cancer ranged from a low of 30 per cent in the UK to 46 per cent in Sweden. Non-small cell survival was relatively low in Denmark, intermediate in Norway and higher in Australia and Canada. The UK also had the lowest one-year small cell survival, Sweden and Australia had the highest. 28

29 Figure 18: Five- year survival for small cell and non- small cell lung cancer is very low but worse for small cell Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry 29

30 6 Variation in lung cancer survival by stage of diagnosis Lung cancer stage at diagnosis is strongly related to one-year survival The stage of lung cancer at the time of diagnosis is strongly related to one-year survival (figure 19). The one-year survival of stage 1 disease (least advanced) in Wales is almost 78 per cent for people diagnosed This is five-and-ahalf times the survival from stage 4 disease (most advanced) at 14 per cent one-year survival. Unfortunately, most people with lung cancer in Wales have a late stage of disease at the time of diagnosis, although the proportion in each stage varies considerably across the country 5. Survival for those with an unknown stage of disease is relatively low, suggesting that the true stage in this group tends to be advanced, although many other factors are probably involved. One-year survival is higher for women than men for all stages apart from stage 2 where survival is similar. The differences are modest approaching a seven percentage point advantage over men in survival for stage 3 disease 3. The all-stage one-year survival for Wales for this latest three year period of 2010 to 2012 is just over 30 per cent, which is consistent with the gradually increasing trend in one-year survival in successive five-year periods we reported earlier in this publication (figure 19). The gap between better survival in women than men also continues to increase for this latest three year period. 30

31 Figure 19: Earlier stage at diagnosis is strongly related to better one-year survival Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry time period. For potentially treatable stage 1 disease one-year survival is 23 per cent higher in the least deprived areas compared to the most deprived As for (figure 15) the all-stage one-year survival for shows no relationship with area deprivation (figure 20). When survival by stage is considered, variation by area deprivation becomes apparent. For stage 1 disease although almost three-quarters survive at least one year in the most deprived areas of Wales, there is a steep gradient with 91 per cent surviving in the least deprived areas that is 23 per cent or 17 percentage points higher. There is a ten percentage point variation for stages 2 and 3 also, but no clear gradient moving from most to least deprived areas. 31

32 Figure 20: There is a steep gradient of worse survival as area deprivation increases for stage 1 lung cancer Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry time period. 32

33 7 Health board populations and lung cancer survival The highest health board one-year survival rate is for the Betsi Cadwaladr population There is some modest variation in one-year survival between the health board area of residence of people diagnosed with lung cancer. For all stages combined ( ) there was just over a seven percentage point difference in survival between the health board area with the highest and lowest one-year survival (figure 21). Apart from the residents of Betsi Cadwaladr health board, that had the highest survival of 34.7 per cent - the only one statistically significantly higher than Wales survival of 30.9 per cent, with no health board significantly lower. When each stage at diagnosis is considered separately wider differences in oneyear survival between health board area of residence are apparent. Only three years of population-level lung cancer data is available with stage information from 2010 to data will be available soon. As most of Powys residents are treated out of area - generally in England - we have not historically received stage information on their cases. A significant proportion of Betsi Cadwaladr patients are also routinely diagnosed or treated in the north west of England, which probably explains why we currently do not know the stage of a large proportion (figure 21). We are working with Public Health England to receive staging information in the near future. Stages 1 and 2 are the most important as people diagnosed at these stages are potential candidates for curative treatment for lung cancer, depending on several other factors. Residents of Cwm Taf have the highest stage 1 one-year survival at 86.2 per cent. This is over eight percentage points higher than the stage 1 survival for Wales, and almost 15 percentage points higher than Cardiff and Vale residents with the lowest stage 1 survival. Because only a minority of lung cancer patients are diagnosed at stage 1, the smaller numbers in each health board means that chance alone may explain some of the observed differences between each other and with the Wales survival rate. The higher survival of unknown stage patients who live in the Betsi Cadwaladr area may reflect cases currently notified to us from hospitals in England but without known stage information passed on to us. 33

34 The size of the variation in survival is similar for stage 2 disease with different health boards having higher and lower values, but as for stage 1 disease, there is a high probability that chance alone explains the observed differences. Figure 21: Residents of the Cwm Taf health board have the highest stage 1 lung cancer survival, residents of Cardiff and Vale health board have the lowest Source: Welsh Cancer Intelligence and Surveillance Unit s National Cancer Registry time period. 34

35 8 Explaining variations and inequalities in survival In conclusion poor lung cancer survival in Wales appears to be due to a number of factors that need to be better understood, mapped and quantified. There are inequalities and variations within Wales and compared with the rest of the UK and many other European countries. Earlier diagnosis across the population is needed and may be possible, but this is limited by the lack or type of lung cancer symptoms. Once someone presents to the NHS in Wales with a suspicion of lung cancer there may be key issues that lie along the patient s pathway, including: - a low surgical resection rate of early stage patients - too many patients presenting as emergencies - variations in lung cancer staging practices - GPs and patients delaying referral - GP access to specialist advice - waiting times for x-rays These and other factors may help explain population-level differences in lung cancer survival between demographic groups and geographic areas in Wales, as well as the international survival differences that exist. Presentation at an earlier stage is one predictor of improved survival the survival rates by stage for Wales show this, with survival rapidly decreasing in later stages. As in most countries, the majority of people diagnosed with lung cancer in Wales present at a late stage a major factor in the overall low survival from lung cancer 5. One explanation for the predominance of late presentation is the natural history of the disease - it can move from stage 1 to 4 very quickly 6 and without treatment even stage 1 disease can be rapidly fatal 7. Symptoms tend to be absent, non-specific, or have little relationship to disease stage 8. The International Cancer Benchmarking Partnership (ICBP) 1 study 3 showed the proportion diagnosed at an early stage for non-small cell lung cancer was slightly lower in the UK and Denmark compared to Australia, Canada, Norway and Sweden. All had the majority of cases diagnosed at a later stage. Similarly, within Wales the variation in stage at diagnosis between health board populations is not very wide (see above). 35

36 The reasons for Welsh patients presenting slightly later than elsewhere are not entirely understood. The ICBP 2 study 3 showed that in Wales and the rest of the UK, people are more likely than people in Australia, Canada, Denmark, Norway and Sweden to say that embarrassment and not wanting to waste the doctor s time would stop them going to the doctor with a possible cancer symptom. Yet most people in the UK and Wales held positive views about cancer, for example the benefits of early diagnosis and improved cancer outcomes. However, negative beliefs about cancer, such as cancer is a death sentence, were prevalent among people with lower levels of education or living in deprived areas of Wales. There is evidence that negative beliefs may be linked to delayed presentation. Once patients present to their GP, other reasons for slightly later stage at diagnosis in Wales may lie at the GP and hospital care boundary, along with access to diagnostic tests. The ICBP 3 study (Neal R, personal communication , 14 th January 2015) showed that GPs in Wales, compared with those in other UK countries and Canada, Australia and Scandinavia, opted to investigate potential symptoms of lung cancer at a later stage. They also reported longer waiting times for x-rays, poorer access to specialist advice, and less ability to hasten tests if cancer is suspected. Several studies have shown that in general practice three or more consultations occurred before being referred in about a third of patients diagnosed with lung cancer 910. But this percentage varied across different types of cancer, suggesting that this had more to do with the diagnostic difficulty of different cancers rather than variations in clinical practice. A recent qualitative study of significant event audits of the diagnosis of lung cancer in general practice in England found that there were issues around communication between primary and secondary care, as well as a patient preference for delayed referral 11. If stage at diagnosis was the only major factor affecting survival then for areas or countries with different stage distributions - and so different overall lung cancer survival - we should still expect survival for each stage to be similar. However, our analyses show that health board stage distribution is only partly correlated with overall one-year survival for each health board. A key feature is the variation between the health boards in the survival for each separate stage at diagnosis (figure 21). The ICBP module 1 study also found similar variability in survival by stage between countries. Denmark had low survival for patients with early stage disease, but average survival for those with more advanced disease. The UK survival figures were among the lowest at all stages compared to the other countries. In Canada patients had high survival at early stages of lung cancer but relatively poor survival at advanced stages of lung cancer. The very low overall one-year lung cancer survival in Wales and other UK countries compared to Sweden, for example, does not seem to be wholly explained by differences in stage distribution. The proportion of patients diagnosed at an early stage for non-small cell lung cancer was only slightly lower in the UK compared to Sweden. Similarly, there is variation in the stage distribution between Welsh health board populations, but it is not great in terms of proportions in stages 1 and 2 that may be potentially treatable. Although variations in the accuracy and completeness of recording stage at diagnosis may 36

37 partly explain the observed differences in survival by stage at diagnosis, overall, the findings suggest factors other than stage at diagnosis are important. The point of access to the NHS at the time of diagnosis appears to be a factor, over and above the stage at diagnosis. Around half the people diagnosed with lung cancer present as an emergency and have worse outcomes than other routes into the NHS in Wales 12. This proportion of emergencies is higher than in England 13. We know that without treatment even stage 1 disease can be rapidly fatal. Early diagnosis alone is not enough. One of the major issues in relation to survival is timely access to potentially curative treatment for people with early stage disease if they wish and are suitable. This may include surgery, radiotherapy or chemotherapy, depending on cancer type. UK countries have low surgical resection rates compared to some other European countries. Wales has a significantly lower surgical resection rate than either England or Scotland. For 2012 data, the average surgical resection rate for confirmed non-small cell lung cancer in England and Wales combined was 21.9 per cent 14. For Scotland it was 20.5 per cent. But for patients seen by clinical teams in the South Wales Cancer Network area (that covers a large proportion of the Welsh population) it was only 15.8 per cent and for the North Wales Cancer Network covering the Betsi Cadwaladr health board area, it was 18.4 per cent. It is not clear why this is, but other existing illnesses (co-morbidity), general health, differences in staging practices, surgery not being offered to older people, patient choice or access to and capacity of specialist surgical services may all play a part. An ICBP team is examining the effect of access to treatment on the international variation in survival rates. We are participating in the ICBP 5 study to examine the contribution of co-morbidity. 37