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National Collaborating Centre for Cancer (UK). Ovarian Cancer: The Recognition and Initial Management of Ovarian Cancer. Cardiff (UK): National Collaborating Centre for Cancer (UK); 2011 Apr. (NICE Clinical Guidelines, No. 122.)

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Ovarian Cancer: The Recognition and Initial Management of Ovarian Cancer.

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1Epidemiology

1.1. Introduction

This chapter provides a summary of the needs assessment that was carried out to inform development of this guideline and includes current information regarding the epidemiology of ovarian cancer.

1.2. Data collection

Office of National Statistics (ONS) and cancer registries

The data on incidence, mortality and survival of ovarian cancer for the United Kingdom is published by the ONS (2007). It is based on the data collated by 11 cancer registries covering England, Wales, Scotland and Northern Ireland (Department of Health, 2008).

Sources for this data include general hospitals, cancer centres, hospices, private hospitals, cancer screening programmes, primary care, nursing homes and death certificates. The minimum dataset of information includes:

  • Patient details (name, date of birth, NHS number, address, ethnicity and sex)
  • Hospital details (hospital, consultant and patient unit number)
  • Diagnostic, tumour and treatment details (site and type of primary tumour, laterality, stage and grade of the tumour, and some treatment information)
  • Death details (date of death, cause and place of death and post mortem information).

There is approximately a two year gap between the event time and the publication of the summary statistics. There is a high degree of completeness in terms of diagnosis and deaths. However, the completeness and quality of data collected on a specific individual and their cancer can be variable.

Registries record information about cancers apparent at the time of diagnosis of the primary neoplasm. However, they do not always record information about management and treatment received. Consequently national data on the management of ovarian cancer is sparse

Some international data are available from GLOBOCAN and EUROCARE and are valuable for the purpose of comparison. The GLOBOCAN project provides contemporary estimates of the incidence of, and mortality from the major types of cancer at a national level, for all countries of the world. The GLOBOCAN estimates are presented for 2008 separately by sex and for all ages. These are calculated from the recent data provided by the International Agency of Research for Cancer (IARC)1. The EUROCARE project seeks to standardise the cancer survival data across Europe in order to provide meaningful comparisons between countries (Berrino, 2003). An important point to remember when looking at the results is that cancer registration in several European countries only covers a small proportion of the total national population. Summary results for these countries may not therefore represent the situation in the country as a whole and hence might not be a true comparison (Berrino et al., 2009).

Hospital inpatient care

In England, the Hospital Episode Statistics (HES) record information on all NHS admissions. These include all day case and inpatient admissions to NHS hospitals (including private patients and non-UK residents) and admissions to independent providers commissioned by the NHS. The information recorded includes patient demographic information, diagnosis for each admission and date and length of admission. A similar system, Patient Episode Database Wales (PEDW) operates in Wales.

The data is processed nationally to remove duplicates and any obvious errors in order to provide the most robust data possible. The quality of the data is only as good as the quality of data entry and this may vary between providers. Systematic misclassification will occur but it is not possible to quantify and its effect is unknown. The Welsh Cancer Intelligence and Surveillance Unit (WCISU) has combined their registry and HES/PEDW data to obtain information on the treatment received by ovarian cancer patients in their locality. There is a similar project being carried out in England by the Trent Cancer Registry and the results are expected later this year.

Hospital outpatient care

Outpatient data have also been collected through the HES and PEDW dataset since 2003. These data record the speciality associated with the appointment but does not record the particular investigation carried out or the results of the appointment and so have not been examined as part of this needs assessment.

1.3. Incidence

Ovarian cancer is the fifth commonest cancer in women in the UK after breast, colorectal, lung and uterus. Approximately 6,700 new cases of ovarian cancer were diagnosed every year in United Kingdom between 2004 and 2007 accounting for approximately 1 in 20 cases of cancer in women (Walsh and Cooper, 2005).

Incidence in the UK, constituent countries and cancer networks

Data in Table 1.1 show that in 2007 6,719 new cases of ovarian cancer were diagnosed in the UK which equates to a crude rate of 21.6 per 100,000 population. The European age standardised incidence rate (EASR) is 17.0 per 100,000 population. There are slight variations in the incidence rate across the constituent countries of the UK. Wales has a higher incidence rate compared to the national rates and Northern Ireland the lowest (14.2 per 100,000 population).

Table 1.1. Number of new cases and rates registered for ovarian cancer in 2007.

Table 1.1

Number of new cases and rates registered for ovarian cancer in 2007.

The latest data of incidence rate by cancer network is from 2005 (Figure 1.1). Comparing networks within England, the incidence rate was highest in the North London Cancer Network with a rate of 24.3 per 100,000 population. The lowest incidence rate was noted in the North of Scotland with an incidence rate of 12.0. All cancer networks in Wales had rates higher than the UK average. These differences in the incidence rates across the UK may have arisen from differences in diagnostic criteria or cancer registration or both.

Figure 1.1. Age-standardised incidence rates of ovarian cancer by Welsh and English Cancer Network, Scotland and Northern Ireland (2005).

Figure 1.1

Age-standardised incidence rates of ovarian cancer by Welsh and English Cancer Network, Scotland and Northern Ireland (2005). Data sources: ISD Scotland, Northern Ireland Cancer Registry, UK Association of Cancer Registries, Welsh Cancer Intelligence (more...)

These data include borderline malignancies. A further confounding issue is that primary peritoneal cancer and metastatic malignant disease of unknown primary origin may also be included.

European and Worldwide comparison

Figure 1.2 shows the incidence rates of ovarian cancer across the world in 2008. The United Kingdom has a relatively high incidence rate of up to 14.6 per 100,000 population. The incidence rates are highest in Central America and Northern Europe and lowest in some parts of Africa and Asia.

Figure 1.2. Worldwide estimated age-standardised incidence rate of ovarian cancer per 100,000 population; all ages (2008).

Figure 1.2

Worldwide estimated age-standardised incidence rate of ovarian cancer per 100,000 population; all ages (2008). Data source: GLOBOCAN 2008 (IARC).

In comparison with other European countries, the UK is among those with the highest incidence rates of ovarian cancer (Figure 1.3). Generally the highest rates are in the Northern and Eastern European countries of Lithuania, Latvia, Ireland, Slovakia and Czech Republic. The lowest rates are in Southern European countries of Portugal and Cyprus.

Figure 1.3. Age-standardised incidence rates of ovarian cancer in the European Union (2008).

Figure 1.3

Age-standardised incidence rates of ovarian cancer in the European Union (2008). Data source: Globocan 2008 (IARC).

Incidence rates of ovarian cancer by age

The lifetime risk of women being diagnosed with ovarian cancer is 1 in 48 (Walsh and Cooper, 2005). The data in Figure 1.4 show that overall 90% of the ovarian cancer recorded in the UK in 2007 were in women aged 45 years and above. The incidence rates are higher in postmenopausal women, with the highest in the age group of 60–64 years of age.

Figure 1.4. Number of new cases diagnosed and incidence rate of ovarian cancer by age in the United Kingdom (2007).

Figure 1.4

Number of new cases diagnosed and incidence rate of ovarian cancer by age in the United Kingdom (2007). Data source: Office for National Statistics.

Trends in incidence rates of ovarian cancer

The age standardised incidence rates of ovarian cancer have increased in the UK from 14.7 in 1975 to 16.4 in 2007 (Figure 1.5). Incidence rates peaked around 1995–1999 and this may be associated with the inclusion of ‘cancer of borderline malignancy’ within the category of ‘malignant cancer’ according to International Classification of Disease for Oncology (ICDO2). The ICDO2 was introduced in England and Wales in 1995, Scotland in 1997 and Northern Ireland in 1996. This could also explain the rising trend of incidence rates after 1996.

Figure 1.5. Trends in age standardised incidence rates of ovarian cancer (1975–2007).

Figure 1.5

Trends in age standardised incidence rates of ovarian cancer (1975–2007). Data Source: Cancer Research UK.

Socioeconomic status and ethnicity

Socioeconomic status has no affect on incidence of ovarian cancer (Figure 1.6).

Figure 1.6. Ovarian cancer incidence by deprivation quintile, England (2000-2004).

Figure 1.6

Ovarian cancer incidence by deprivation quintile, England (2000-2004). Data source: NCIN 2009.

The National Cancer Intelligence Network (NCIN) recently published a report analysing the relationship between cancer incidence and ethnicity in those diagnosed with cancer in England (2002-2006) (NCIN, 2009). It showed Asian and Black ethnic groups have lower incidence rates of ovarian cancer compared to the White ethnic group. The analysis was presented only on Asian, Black and White ethnic group due to the small number of Chinese and Mixed ethnic groups in the study.

1.4. Mortality

Approximately 4,300 women die from ovarian cancer each year in the UK which makes it the leading cause of death in gynaecological cancers (Cancer Research UK2). It accounts for 6% of all cancer deaths in women. The reason for the high mortality rate in ovarian cancer may be because most women are diagnosed with advanced ovarian cancer at the time of detection.

Mortality rates in the United Kingdom

The age-standardised mortality rates are similar across all countries within the UK with an overall average of 9.7 (Table 1.2). The highest mortality rate is seen in Northern Ireland (11.0) compared to the UK average. Wales has the lowest mortality rate in spite of a high incidence rate (see Table 1.1).

Table 1.2. Number of deaths and European age-standardised mortality rates of ovarian cancer per 100,000 population in the UK (2008).

Table 1.2

Number of deaths and European age-standardised mortality rates of ovarian cancer per 100,000 population in the UK (2008).

Mortality rates by cancer network

The mortality rate of ovarian cancer by cancer network in 2005 was highest in the Peninsula and Mid Trent Cancer Network and lowest in the North London, West London and North East London Cancer Networks (Figure 1.7).

Figure 1.7. Age-standardised mortality rates of ovarian cancer by cancer network in the UK (2005).

Figure 1.7

Age-standardised mortality rates of ovarian cancer by cancer network in the UK (2005). Data sources: ISD Scotland; Northern Ireland Cancer Registry; UK Association of Cancer Registries; Welsh Cancer Intelligence and Surveillance Unit; NCIN 2008

Mortality rates and number of deaths by age

Data in Figure 1.8 show the number of deaths and mortality rate by age in the UK in 2008. The number of deaths is highest in 70-74 years age group, but the highest mortality rates are in the 80-84 years age group.

Figure 1.8. Number of deaths and mortality rate of ovarian cancer in the UK by age (2008).

Figure 1.8

Number of deaths and mortality rate of ovarian cancer in the UK by age (2008). Data source: Reproduced from Cancer Research UK.

Worldwide and European comparisons

The global and European data in this section for ovarian cancer are contemporary estimates from the GLOBOCAN project (Figure 1.9). The advantage of global data is national coverage and long-term availability. However, the data quality varies considerably. These data indicate that the United Kingdom and Ireland have comparatively high mortality rates even when compared to other European countries.

Figure 1.9. Worldwide estimated age-standardised mortality rate of ovarian cancer per 100,000 population, all ages (2008).

Figure 1.9

Worldwide estimated age-standardised mortality rate of ovarian cancer per 100,000 population, all ages (2008). Data source: GLOBOCAN 2008 (IARC).

Across Europe, the highest mortality rates are seen in Northern Europe and Ireland (Figure 1.10). This is similar to the high incidence rates seen in these regions.

Figure 1.10. Estimated age-standardised mortality rate of ovarian cancer, European Union (2008).

Figure 1.10

Estimated age-standardised mortality rate of ovarian cancer, European Union (2008). Data source: GLOBOCAN 2008 (IARC).

Trends in mortality rates and numbers of deaths from ovarian cancer

Data in Figure 1.11 show the trends in the age-specific mortality rate of ovarian cancer from 1971 to 2008. The trends vary across the different age groups. The mortality rate shows a gradual increase in women over 65 years of age with some decline in younger women. It is evident from the graph that the mortality rate has been fairly stable over the last 10 years in women under 49 years of age compared to the age group of 50-64 years where there has been a steady decline. Overall mortality rate of ovarian cancer remains relatively stable in spite of the increasing incidence.

Figure 1.11. Trends in age specific mortality rate of ovarian cancer by age in United Kingdom (1971-2008).

Figure 1.11

Trends in age specific mortality rate of ovarian cancer by age in United Kingdom (1971-2008). Data source: Reproduced from Cancer Research UK.

1.5. Survival

Most women are diagnosed with advanced stage disease and this contributes to ovarian cancer having the lowest relative five year survival rate of all gynaecological cancers (ONS 2007).

Trends in survival rates from ovarian cancer

The five year survival rates for patients with ovarian cancer have increased dramatically from 20% in 1975 to 38.9% in 2006 (Figure 1.12). A similar trend has been observed in ten year survival rate from 20% between 1971-1975 to 33.3% between 1996-2000 (Figure 1.13). The two fold increase in the survival rate may be due to early detection methods, improved treatment modalities, or inclusion of borderline tumours which have a good prognosis (ONS 2007; Richard 2008; Rachet et al., 2009).

Figure 1.12. Trends in the age-standardised one year, five year and ten year (1971-2000) survival rate of ovarian cancer in England and Wales (1971-2006).

Figure 1.12

Trends in the age-standardised one year, five year and ten year (1971-2000) survival rate of ovarian cancer in England and Wales (1971-2006). * England only data ** shows one year survival between 2001-2003 and five year survival between 2001-2006

Figure 1.13. Age-standardised five year relative survival of ovarian cancer by age in England (2001-2006).

Figure 1.13

Age-standardised five year relative survival of ovarian cancer by age in England (2001-2006). Data source: Office of National Statistics-Statistical Bulletin Cancer survival in England (Berrino 2003; Berrino et al., 2009)

Survival rate by age at diagnosis

The survival rate based on age at diagnosis is shown in Figure 1.13. Both the one-year and five year survival are higher in young women (15-39) compared to older women (>40). In women aged 15-39 years the one year and five year survival are 93% and 84% respectively compared to 31% and 14% in the 80-89 age group.

International comparison

In this section international data are presented from EUROCARE and the International Cancer Benchmarking Partnership (ICBP) and are valuable for the purpose of comparison. The EUROCARE project seeks to standardise the cancer survival data across Europe in order to provide meaningful comparisons between countries (Berrino, 2003). The ICBP compares 12 jurisdictions in six countries with comprehensive cancer registration, and broadly similar healthcare systems. The ICBP is also the most up to date international survival comparison providing data from 1995 to 2007, whereas the main EUROCARE studies completed in 1999.

In an international comparison of women diagnosed with ovarian cancer in 1995–1999, the survival rates in England, Wales, Scotland and Northern Ireland were significantly lower than the European average (Figure 1.14). A more up to date study from 1995–2007 reported an increase in survival in England, Wales and Northern Ireland, but a persistent gap in five year survival between the UK nations and Norway, Australia and Canada (Figure 1.15) (ICBP, 2011). It has been estimated that the 5 year ovarian cancer survival gap compared to the best in Europe accounts for 500 avoidable deaths a year (Abdel-Rahman et al., 2009).

Figure 1.14. Relative five year survival rate, cumulative of ovarian cancer for women aged 15-99 years diagnosed 1995-1999 across Europe.

Figure 1.14

Relative five year survival rate, cumulative of ovarian cancer for women aged 15-99 years diagnosed 1995-1999 across Europe. Data source: Eurocare 4 Database

Figure 1.15. Relative five year age standardized survival rate (Australia = New South Wales, Victoria, Canada = Alberta, British Columbia, Ontario, Manitoba, UK = England, Wales, Northern Ireland).

Figure 1.15

Relative five year age standardized survival rate (Australia = New South Wales, Victoria, Canada = Alberta, British Columbia, Ontario, Manitoba, UK = England, Wales, Northern Ireland). Data source: ICBP, 2011

Survival by stage

Ovarian cancer is staged using the FIGO classification (Box 1.1), based on the information obtained from surgery, supplemented by imaging information where appropriate. Optimum surgical staging comprises midline laparotomy to allow thorough assessment of the abdomen and pelvis; a total abdominal hysterectomy, bilateral salpingo-oophorectomy and infracolic omentectomy; biopsies of any peritoneal deposits; random biopsies of the pelvic and abdominal peritoneum and retroperitoneal lymph node assessment (Winter-Roach et al., 2009). Cancer registries use TNM classification similar to FIGO staging.

Box Icon

Box 1.1

FIGO staging for ovarian cancer. involves one ovary; capsule intact; no tumour on ovarian surface; no malignant cells in ascites or peritoneal washings involves both ovaries; capsule intact; no tumour on ovarian surface; negative washings

Currently there is only data available in Wales on the stage at presentation for women with ovarian cancer. Data from WCISU showed that only 10-20% of staging data are recorded on their Cancer registry database for patients with ovarian cancer (Figure 1.16). This makes statistical analysis based on staging difficult. Data from England is expected and has yet to be published.

Figure 1.16. Ovarian cancer by stage, Wales (2000-2007).

Figure 1.16

Ovarian cancer by stage, Wales (2000-2007). Data source: WCISU

Socioeconomic status and ethnicity

Among adults living in the most deprived areas who were diagnosed cancer between 1981 and 1990, 5-year survival was significantly lower than for those in the most affluent areas for 44 of 47 different cancers (Coleman et al., 1999). More recent data would suggest that whilst there still remains a gap in survival at one year in women living in deprived areas, this has largely disappeared in terms of five year survival. The gap at one year may well relate to presentation with advanced disease combined with poor access to appropriate treatment. Improvement in the latter (Cooper et al., 2008) may be reflective of improved access to specialist treatment.

1.6. Routes to diagnosis

For all patients diagnosed with cancer in England in 2007, the National Cancer Intelligence Network (NCIN) has published data on the different routes taken by patients to their cancer diagnosis (NCIN, 2010). Data in Table 1.3 highlights a wide variation in routes to diagnosis for ovarian cancer patients and shows that the majority of patients attend electively, however a significant proportion attend as emergencies. A large proportion of elective admissions present outside the urgent (two week) referral pathway.

Table 1.3. Routes to diagnosis for ovarian cancer, England (2007).

Table 1.3

Routes to diagnosis for ovarian cancer, England (2007).

1.7. Treatment

Ovarian cancer is managed using a number of treatments which usually comprise chemotherapy or surgery often in combination. As there was no available comparative national data on treatment modalities, a questionnaire was developed by the GDG and sent to all cancer networks. Only two cancer networks were able to provide data on treatments used. In one region it appeared that up to 40% of patients are managed with chemotherapy alone (this had an association with age). In the other region there was marked variation between hospitals and within hospitals over time in the proportion of patients receiving chemotherapy. The reason for this variation is not understood.

Surgery

Currently there is only data available in Wales on the surgical management of women with ovarian cancer. Data from England is expected and yet to be published.

WCISU recently combined PEDW data on the surgical management of women with ovarian cancer using data from the financial years 2004 to 2009. There were a total of 1919 women diagnosed with ovarian cancer during that time.

Figure 1.17 illustrates the different procedures carried out in the three cancer networks in Wales. The most frequent procedure undertaken involves total abdominal hysterectomy, bilateral salphingo-oopherectomy and omentectomy as this involves the staging laparotomy.

Figure 1.17. Number of different surgical procedures performed for ovarian cancer by cancer network, Wales (2004-2008).

Figure 1.17

Number of different surgical procedures performed for ovarian cancer by cancer network, Wales (2004-2008). Data source: WCISU

1.8. The findings of cancer peer review of gynaecology cancer teams in England 2004-2007

The Calman-Hine report on a ‘Policy Framework for Commissioning Cancer Services’ published in 1995 and the series of NICE ‘Improving Outcome Guidance’ formed the basis of establishing national standards for cancer care in England. This led to the establishment of a National Cancer Peer Review (NCPR) process which is a national quality assurance programme for NHS cancer services in England. It aims to improve the care of the patients with cancer and their families. This is done through self-assessment by cancer service teams and external review by professional peers against nationally agreed quality peer review measures.

The first programme of review focussed on services in four tumour site areas; breast, lung, colorectal, gynaecology and was coordinated on a regional rather than national basis. The programme was independently evaluated, the results of which informed the development of the 2004-08 National Cancer Peer Review Programme.

Currently the NCPR programme consists of the three key stages illustrated in the Figure 1.18.

Figure 1.18. Stages of the National Cancer Peer Review Programme on gynaecology cancer teams (2004-2008).

Figure 1.18

Stages of the National Cancer Peer Review Programme on gynaecology cancer teams (2004-2008).

All cancer networks in England and all their designated local and specialist Gynaecology cancer teams were reviewed against the national standards by a team of clinical peers between 2004 and 2008. The reports of these reviews are available publicly via the ‘CQuiNS’ website3‥ The review was for all gynaecological cancers and not for ovarian cancer alone. During the targeted visit, the peer group reviewed whether each measure is achieved or not and whether overall progress is being made toward the achievement of the standards. Following the outcome of the review, the cancer networks should agree actions in order to meet those standards not currently being met achieved within defined timescales.

The results of the most recent peer review process in England (2009-2010) were published by the National Cancer Action Team (NCAT) in October 2010 and included a separate report for gynaecology MDTs. They reported that MDTs have improved their overall compliance against the measures since the 2004/2008 peer review round by 11%. A summary of all the findings can be found in the full report (NCAT, 2010).

1.9. Summary

Ovarian cancer is the second most common gynaecological cancer in the UK accounting for over 6,700 new cases diagnosed each year. The rates have been steadily increasing over the past 20-25 years, with a notable increase in the 65 years and above age group. There is some geographic variation in the incidence rate across the UK. This may be due to variation in diagnostic criteria, cancer registration or population.

Ovarian cancer is the leading cause of death in women with gynaecological cancer and accounts for 6% of all deaths in women. The mortality rate remains almost the same in all regions of the UK. There has been a two fold increase in the survival rate over the last two decades which might reflect better diagnostic and treatment methods.

The process of producing this report has highlighted the lack of data available to assess the burden of the disease based on the stage and the type of ovarian cancer. It is clear that there are difficulties in the collection and definitions in the minimum dataset for ovarian cancer. This deficiency makes the interpretation of effectiveness of treatments highly uncertain and is an important obstacle to improving cancer care for women with ovarian cancer.

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