Mesothelioma: exploring gender differences in time to diagnosis, seeking legal advice and occupational risk
Intended for healthcare professionals
Evidence and practice    

Mesothelioma: exploring gender differences in time to diagnosis, seeking legal advice and occupational risk

Michaela Senek Research Associate, School of Health Sciences, University of Sheffield, Sheffield, England
Steven Robertson Programme Director, University of Sheffield, Sheffield, England, and emeritus professor, Leeds Beckett University, Leeds, England
Angela Tod Professor, University of Sheffield, Sheffield, England
Molly Squibb Office Senior, HASAG Asbestos Disease Support, Southampton, England

Why you should read this article:
  • To refresh your knowledge of mesothelioma and its link to occupational exposure to asbestos

  • To enhance your awareness of gender differences in the occupational risk of mesothelioma

  • To identify how you could improve your care of patients following a diagnosis of mesothelioma

Background Gender differences in the incidence of, and survival from, malignant mesothelioma are well documented. However, other possible gender differences – such as initial symptom development, experience of the diagnosis, occupational risk and the extent to which patients seek legal advice and receive compensation – are less well understood.

Aim To explore gender differences among patients with mesothelioma in relation to time from symptom onset to diagnosis, seeking legal advice and receiving compensation, and occupational risk.

Method Statistical analysis was conducted on data collected between January 2016 and December 2018 by HASAG Asbestos Disease Support about 1,177 patients with mesothelioma living in the south and south east of England.

Results It took longer for women to be diagnosed than for men, but the difference was not statistically significant. Women were less likely than men to have sought legal advice, had a longer time from diagnosis to receiving compensation, and were less likely to have received compensation. In women, the occupational risk was more likely to be linked to indirect exposure to asbestos in a potentially contaminated work environment than to direct exposure.

Conclusion The emphasis on the risk of exposure to asbestos in high-risk occupations may have obscured the risk of exposure in low-risk occupations. Gender differences in mesothelioma could be reduced by enhancing awareness of the risk of low-level exposure to asbestos, reviewing diagnostic processes and improving support and information for patients.

Cancer Nursing Practice. doi: 10.7748/cnp.2020.e1745

Peer review

This article has been subject to external double-blind peer review and has been checked for plagiarism using automated software

@MichaelaSenek

Correspondence

m.senek@sheffield.ac.uk

Conflict of interest

None declared

Senek M, Robertson S, Tod A et al (2020) Mesothelioma: exploring gender differences in time to diagnosis, seeking legal advice and occupational risk. Cancer Nursing Practice. doi: 10.7748/cnp.2020.e1745

Acknowledgements The Gendered Experience of Mesothelioma Study (GEMS) is a Mesothelioma UK collaborative study supported by donations from 12 King’s Bench Walk, HASAG Asbestos Disease Support, Irwin Mitchell Solicitors, Mesothelioma UK, the Papworth Mesothelioma Social Group and Royds Withy King

Published online: 14 December 2020

Introduction

Malignant mesothelioma is an aggressive type of cancer that affects the mesothelium (a thin layer of tissue lining several human body cavities) and is predominantly caused by exposure to asbestos (Stahel et al 2008). Box 1 provides information about asbestos and the link between asbestos and mesothelioma. In the UK, people with an asbestos-related disease such as mesothelioma may be eligible to compensation in the form of industrial injuries disablement benefit (Gov.uk 2020).

Box 1.

Asbestos and mesothelioma

  • Asbestos is a naturally occurring mineral composed of soft, flexible fibres that are heat and fire resistant. In the UK, the import, supply and use of all types of asbestos is banned since 1999 and the most hazardous type, amphibole, is banned since 1985. Before being banned, asbestos was used in a range of products, including car brakes, floor tiles and insulation material for buildings, boilers and pipes (Public Health England 2017). Asbestos is not considered harmful when in large pieces and undamaged. However, when damaged and breaking down, it can release small fibres that can be breathed in or swallowed. This may lead to a condition called asbestosis, which increases the susceptibility to cancer. Asbestos has therefore been classified as carcinogenic in humans (Public Health England 2017)

  • In the UK, a value of <0.01 asbestos fibres per cubic centimetre of air (f/cm3) is the threshold accepted as ‘a transient indication of site cleanliness’ (Health and Safety Executive 2013). However, Morrin et al (2019) asserted that the UK’s current asbestos regulations permit levels of airborne asbestos (0.01f/cm3) that are significantly higher than acceptable levels in Germany (0.001f/cm3), France (0.005f/cm3) or the Netherlands (0.002f/cm3). Morrin et al (2019) also noted that, to monitor levels of airborne asbestos, the UK uses phase-contrast microscopy, which is less sensitive than the electron microscopy techniques used in Germany, France and the Netherlands. Therefore, the risk of exposure in the UK may be underestimated

  • In the UK, the Control of Asbestos Regulations 2012 (Health and Safety Executive 2013) recommend that asbestos should be maintained in situ rather than removed. Leaving asbestos in situ may reduce the risk of asbestos fibres becoming airborne and therefore reduce the immediate risk of exposure. However, it also means that the risk of exposure is deferred rather than eliminated, and that accurate and thorough tracking and documentation of any asbestos remaining in situ are required for years to come

Gender differences in mesothelioma such as men’s higher incidence of mesothelioma and women’s greater survival from the disease are well documented. However, other possible gender differences in mesothelioma are less well understood – for example, differences in the initial development of symptoms, experience of receiving and living with a diagnosis of mesothelioma, occupational risk, and extent to which patients seek legal advice and receive compensation. This article details a study called the Gendered Experience of Mesothelioma Study (GEMS), undertaken to explore some of these possible gender differences in mesothelioma.

Key points

  • Mesothelioma is an aggressive type of cancer predominantly caused by exposure to asbestos

  • In mesothelioma, gender differences in incidence and survival are well documented but other gender differences are less well understood

  • In women, the occupational risk of mesothelioma appears to be linked more to indirect exposure to asbestos in a potentially contaminated work environment than to direct exposure

  • In a study of 1,177 patients with mesothelioma, women were less likely than men to have sought legal advice and received compensation

  • The emphasis on the risk of exposure to asbestos in high-risk, traditionally male occupations may have obscured the risk of exposure in low-risk, traditionally female occupations

  • Nurses can support patients following a diagnosis of mesothelioma by providing timely information and signposting them to expert legal advice

Background

Mesothelioma has a long latency period, with an estimated median of 32 years (Frost 2013). There are two types: pleural mesothelioma, which affects the lungs and accounts for approximately 75% of cases, and peritoneal mesothelioma, which affects the abdomen and accounts for the remaining 25% (Frost 2013). Research has shown that early identification is crucial (Stahel et al 2008). Taioli et al (2014) found that women with mesothelioma under the age of 45 years who had been diagnosed early had better survival rates compared with women of the same age who had been diagnosed later.

Globally, the incidence of mesothelioma has risen steadily over the past decade. It is highest in the US and UK, although Australia and Italy also rank highly in terms of the number of cases per capita (Bibby et al 2016). In the UK, there were around 2,700 new cases of mesothelioma per year between 2015 and 2017 (Cancer Research UK 2020). A geographical analysis of mesothelioma deaths in Great Britain between 1968 and 2001 showed a higher prevalence in areas with a higher concentration of industrial sites such as shipyards, while an analysis by occupation suggested that asbestos exposure in the construction industry also accounted for a substantial proportion of mesothelioma deaths (McElvenny et al 2005).

In 2017, 17% of mesothelioma cases in the UK were in women and 83% in men (Cancer Research UK 2020). Furthermore, in mesothelioma, one-year and five-year survival rates are higher in women than in men (Cancer Research UK 2020). These gender differences are thought to result from men’s greater exposure to asbestos and from the physiological protection afforded to women against the disease by circulating hormones (Taioli et al 2014).

Aim

The aim of the GEMS was to explore gender differences among patients with mesothelioma in relation to time from symptom onset to diagnosis, seeking legal advice and receiving compensation, and occupational risk.

Method

Source of data

In the UK, several charities provide support and guidance to people with asbestos-related diseases. One such charity is HASAG Asbestos Disease Support (hasag.co.uk). The GEMS used data routinely collected by HASAG about new patients accessing its services. The data used in the study had been collected between 1 January 2016 and 31 December 2018 about 1,177 patients with mesothelioma. A member of the HASAG team had collected and anonymised information including:

  • Demographic data.

  • Self-reported date of symptom onset (as recalled by patients).

  • Date of diagnosis.

  • Legal claim status.

  • Date and amount of compensation awarded.

  • Occupation.

HASAG primarily covers the south and south east of England, including London, so the vast majority of patients in the study lived in that geographical area of the UK.

Data sharing agreement and ethical approval

In January 2019, a data sharing agreement was put in place between HASAG and the University of Sheffield, England, where the research team – comprising the first three authors of this article – was based. Ethical approval was obtained from the university’s ethics committee in April 2019. Once ethical approval had been obtained, HASAG shared the data with the research team via a password-protected email account. All data were stored on a university-based, password-protected server that could only be accessed by the research team.

Statistical analysis

Statistical analysis focused on gender differences regarding:

  • Prevalence rates of pleural and peritoneal mesothelioma.

  • Time from symptom onset to diagnosis.

  • Interest in receiving legal advice, intention to seek legal advice and action of seeking legal advice.

  • Time from diagnosis to receiving industrial injuries disablement benefit.

  • Occupation.

Statistical analysis was conducted using SPSS version 26. The Shapiro-Wilk test was used to assess the normality of data. For data where normal distribution could not be assumed, descriptive statistics were expressed as medians and interquartile ranges (IQRs). The Mann-Whitney U test was used to compare non-parametric data. A probability value below 0.05 (P<0.05) was considered to be statistically significant. The Mantel-Cox method was used for survival analysis.

Results

The GEMS data concerned 1,177 patients with mesothelioma, 971 men (82%) and 206 women (18%). The gender distribution was consistent with the National Mesothelioma Audit for the period 2016-18, in which approximately 82% of patients were male and 18% were female (Royal College of Physicians (RCP) 2020). Table 1 summarises some of the patient demographics.

Table 1.

Patient demographics (n=1,177)

VariableMen (n=971)Women (i=206) P value
Mean age at diagnosis 75 years (standard deviation 9 years)73 years (standard deviation 12 years)0.04 *
n % n %
Age range at diagnosis ≤50 years
51-60 years
61-70 years
71-80 years
81-90 years
91-100 years
5
36
241
408
252
27
1
4
25
42
26
3
10
15
31
91
50
8
5
7
15
44
24
4
Mesothelioma type Pleural mesothelioma
Peritoneal mesothelioma
963
8
99
1
194
12
94
6
0.03 *

Statistically significant

Age was missing for two men and one woman

In the GEMS population, fewer than 2% of patients overall had peritoneal mesothelioma, which is lower than in the National Mesothelioma Audit for 2016-18, in which the percentage was around 4% (RCP 2020). Women were more likely to have peritoneal mesothelioma than men: 6% of women (n=12) had peritoneal mesothelioma versus 1% of men (n=8).

The median age at diagnosis was lower in patients with peritoneal mesothelioma than in those with pleural mesothelioma (peritoneal mesothelioma =71 years, IQR=57-75 years; pleural mesothelioma =75 years, IQR=70-82 years; P=0.06).

Among patients with pleural mesothelioma, there was no statistically significant gender difference in median age at diagnosis (men=70 years, IQR=70-76 years; women=71 years, IQR=71-81 years; P=0.6).

There were significantly more women (n=10, 5%) than men (n=5, 1%) in the youngest age range (≤50 years).

Time from symptom onset to diagnosis

Among patients with pleural mesothelioma, there was a gender difference in the median time from symptom onset to diagnosis, but that difference was not statistically significant (men=134 days, IQR=97-217 days; women=136 days, IQR=96-197 days; P=0.6).

Among patients with peritoneal mesothelioma, again, there was a gender difference in the median time from symptom onset to diagnosis, but that difference was not statistically significant (men=199 days, IQR=44-350 days; women=213 days, IQR=104-259 days; P=0.7).

In both genders, it took longer for patients with peritoneal mesothelioma than for patients with pleural mesothelioma to be diagnosed.

Seeking legal advice and receiving compensation

Women were less likely than men to have been interested in receiving legal advice: 35% of women (n=72) said they had not been interested in receiving legal advice versus 18% of men (n=175). Women were also less likely than men to have intended to seek legal advice. Furthermore, there was a difference in the percentage of men and women who had sought legal advice: 80% of men (n=777) versus 60% of women (n=124) had done so.

The median time from diagnosis to receiving industrial injuries disablement benefit was shorter in men than in women, but the difference was not statistically significant (men=43 days, IQR=33-59 days; women=47 days, IQR=35-69 days; P=0.09). The percentage of women who had not received industrial injuries disablement benefit was 12% (n=24), compared with 3% (n=29) in men.

Occupational risk

Table 2 shows the five most common occupation types of men and women in the study. Many patients were retired at the time of data collection, so the occupation type they indicated would have represented their main occupation over the course of their working life. The five most common occupation types in men were ‘carpenter’, ‘engineer’, ‘builder’, ‘electrician’ and ‘plumber’, with 530 men (55%) in total. The five most common occupation types in women were ‘administrative or clerical’, ‘teacher’, ‘factory’, ‘health’ and ‘sales’, with 113 women (55%) in total.

Table 2.

Five most common occupation types in men and women (n=1,177)

cnp.2020.e1745_0002_tb1.jpg

A large proportion of men among those working in the top five male occupation types – 395 of 530 (75%) – were employed in construction-related occupations where there is potentially a risk of handling asbestos directly (‘carpenter’, ‘builder’, ‘electrician’ and ‘plumber’). These occupations are traditionally viewed as carrying a high risk of exposure to asbestos.

All women working in the top five female occupation types – 113 of 113 (100%) – were employed in roles where there is potentially a risk of indirect occupational exposure to asbestos in ageing and contaminated buildings such as office blocks, schools, factories and hospitals (‘administrative or clerical’, ‘teacher’, ‘factory’, ‘health’ and ‘sales’). These occupations are traditionally viewed as carrying a low risk of exposure to asbestos.

Among all 1,177 patients, 209 (18%) had occupation types carrying an indirect risk of exposure in a potentially contaminated work environment (‘administrative or clerical’, ‘teacher’, ‘factory’, ‘health’ and ‘sales’), as opposed to a direct risk due to the potential handling of asbestos. For patients in the ‘engineer’ occupation type, arguably, there could have been both a direct and an indirect risk of exposure.

A survival analysis compared the time from symptom onset to diagnosis between men employed in the top five male occupation types and women employed in the top five female occupation types. The median time from symptom onset to diagnosis in those two groups was 138 days in women and 135 days in men (P=0.6).

A survival analysis compared the time from diagnosis to receiving industrial injuries disablement benefit between men employed in the top five male occupation types and women employed in the top five female occupation types. There was a statistically significant gender difference, with men receiving compensation sooner than women (median time in men=43 days, IQR=42-51 days; median time in women=47 days, IQR 41-45 days; P=0.012). This suggests that the apparent gender difference in the time from diagnosis to receiving industrial injuries disablement benefit could be linked more to occupation than to gender. However, occupations themselves often represent gendered social roles, so it is likely that gender and occupation interact, resulting in differing levels of risk and differences in access to compensation.

The time from diagnosis to receiving industrial injuries disablement benefit was also compared between men and women in occupation types where there was an overlap of genders (that is, all occupation types except ‘carpenter’ and ‘engineer’, where there were fewer than five women and 100 men or more). There was no statistically significant difference between men and women in the occupation types ‘teacher’, ‘health’ and ‘sales’. The only statistically significant gender difference was in the ‘administrative or clerical’ occupation type, where the median time from diagnosis to receiving industrial injuries disablement benefit was 44 days for men (IQR=37-50 days) and 51 days for women (IQR=45-56 days) (P=0.037).

Patients with an occupational risk of exposure to asbestos traditionally considered to be low, for example administrative or clerical workers, were at a disadvantage compared with patients with an occupational risk of exposure to asbestos traditionally considered to be high, for example carpenters. This disadvantage existed both in terms of time from symptom onset to diagnosis and time from diagnosis to receiving compensation. Because of gender differences in the choice of occupation type, there were more women than men employed in occupations where the risk of exposure to asbestos is traditionally considered to be low.

Discussion

The GEMS provides new insights into gender differences in mesothelioma in relation to time from symptom onset to diagnosis, seeking legal advice and receiving compensation, and occupational risk.

Time from symptom onset to diagnosis

Overall, it took longer for women to be diagnosed than for men, but the difference was not statistically significant. The date of symptom onset was as recalled by patients and there were no data regarding the date of first presentation to healthcare services, so the study does not allow to determine whether there was a gender difference in the time between first presentation to a healthcare professional and diagnosis.

Seeking legal advice and receiving compensation

There were gender differences both in the intention to pursue a legal claim and the action taken to pursue such a claim. In line with several non-UK studies (Kirkham et al 2011, Chamming’s et al 2013, Laaksonen et al 2019), the GEMS found that women were less likely than men to have sought legal advice (60% of women versus 80% of men). Women were also disadvantaged in terms of time from diagnosis to receiving compensation and were less likely to have received compensation. Whether or not patients had received compensation was self-reported by patients, so the study does not allow to determine whether there were gender differences in how claims had been processed or how compensation had been awarded.

Further research is required into why, following a diagnosis of mesothelioma, women tend to pursue legal claims and seek compensation less often than men, since there may be important implications in terms of adequately advising and supporting patients. Because the GEMS was limited to one geographical area of England, further research is needed to test the study results against a national data set. So far, no data have been collected at national level on intention and action taken to seek legal advice in mesothelioma cases. However, in 2019, the charity Mesothelioma UK conducted a national survey that could provide relevant data for future research.

The non-statistically significant gender difference identified in the time from diagnosis to receiving compensation could be due to differing levels of awareness of asbestos-related diseases. Men were more likely than women to have worked in high-risk occupation types, where there is first-hand experience of such diseases. Consequently, it may be that men were more likely to be aware of the possibility of compensation and therefore quicker to pursue a legal claim following diagnosis. Women were more likely to have worked in low-risk occupation types, where there has historically been less awareness of the risk of exposure to asbestos and fewer precedents for taking legal action.

Occupational risk

In women, the occupational risk was more likely to be linked to indirect exposure to asbestos in a potentially contaminated work environment than to direct exposure. Unlike Rake et al (2009), the GEMS did not find that the occupational risk in women was concentrated in industrial settings, since many women in the GEMS had occupation types based in environments such as office blocks, schools and hospitals.

Previous research has indicated that mesothelioma can develop from long-term exposure to low concentrations of asbestos fibres in the air (Rake et al 2009). The GEMS results suggest that there is a possibility that long-term, low-level exposure to asbestos could be causing an increase in the prevalence of mesothelioma among people working in low-risk occupations, who tend to be women. A high proportion of mesothelioma cases among people employed in low-risk occupations would suggest that long-term, low-level exposure is a concern. Further research in this area is required.

The GEMS raises the important question of whether the emphasis on the risk of asbestos exposure in high-risk occupational branches such as the construction industry may have obscured the risk associated with long-term, low-level exposure resulting from working in ageing buildings potentially contaminated with asbestos. Because of the long latency period in mesothelioma, further research into the real-time risk of exposure is necessary.

Limitations

The GEMS population was concentrated in the south and south east of England, so it was not representative of patients with mesothelioma across the UK. It may be that the results would differ in the north of England and in Scotland, where there is a higher concentration of industrial sites. Therefore, research using a national data set would be beneficial.

Another limitation of the study was that the data available to the research team did not include information on previous medical history, potential exposure to asbestos in childhood, potential exposure in other professional occupations, patients’ exact geographical location and risk of exposure in patients’ partners – all factors that could potentially have been linked to the development of mesothelioma.

Implications for clinical practice

The GEMS results have several implications for clinical practice, in particular around diagnostic processes, providing support and signposting patients to expert advice.

While no statistically significant gender difference was found in the time from symptom onset to diagnosis, it still took longer for women to be diagnosed than for men, particularly among patients with peritoneal mesothelioma. The reasons for this gendered delay in diagnosis may differ for each type of mesothelioma.

In peritoneal mesothelioma, the diagnostic process can be complicated by the presence of symptoms such as abdominal pain, constipation or diarrhoea, and swelling and/or tenderness around the abdomen. Peritoneal mesothelioma is only diagnosed by means of a biopsy, so it is often initially misdiagnosed as a less serious abdominal condition (Kim et al 2017). Furthermore, in women, peritoneal mesothelioma is often not initially considered as a possible diagnosis because other possible diagnoses, notably gynaecological disease, are explored first. In March 2016, a group of multidisciplinary professionals working in peritoneal mesothelioma in the UK and Ireland was established. The group meets annually via videoconference. An audit of the group’s first two and a half years of activity confirmed that it is common for people with peritoneal mesothelioma to experience diagnostic delay (Brandl et al 2020). The processes used to diagnose peritoneal mesothelioma vary widely across the UK and it could be beneficial to review them at national level to ensure the condition is diagnosed as early as possible in all patients.

In pleural mesothelioma, men are often diagnosed sooner than women. This may be because healthcare professionals have a greater awareness of the risk of mesothelioma in traditionally male occupations, and are therefore more likely to suspect mesothelioma in male patients presenting with lung symptoms and to take a detailed occupational history in such patients (Taioli et al 2014). To improve the diagnosis of pleural mesothelioma, it could be beneficial to review how occupational history is taken in healthcare settings.

In both types of mesothelioma, patients who experience a diagnostic delay may require additional support for coming to terms not only with the diagnosis they have received, but also with the diagnostic delay they have experienced.

Once patients have received a diagnosis of mesothelioma, nurses can support them by providing timely information and by signposting them to expert advice on the legal aspects of claiming compensation. Not addressing this aspect of mesothelioma care appropriately can have detrimental psychological effects on patients (Ball et al 2016).

Conclusion

The GEMS provides new insights into gender differences in mesothelioma regarding time from symptom onset to diagnosis, seeking legal advice and receiving compensation, and occupational risk. Further research is required to fully understand the reasons for these differences. It is possible that the emphasis on the risk of exposure to asbestos in high-risk, traditionally male occupations has obscured the risk of exposure to asbestos in low-risk, traditionally female occupations, and this requires further investigation. The care of patients with mesothelioma could be improved, and gender differences reduced, by reviewing diagnostic processes and occupational history taking; providing timely information to patients about the legal aspects of claiming compensation; and enhancing professional and public awareness of the risk of low-level, indirect occupational exposure to asbestos in potentially contaminated work environments.

Further resources

Mesothelioma UK

www.mesothelioma.uk.com

References

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