Malignant pleural mesothelioma patients' experience by gender: findings from a cross-sectional UK-national questionnaire

Our plain-English summary of Malignant pleural mesothelioma patients' experience by gender: findings from a cross-sectional UK-national questionnaire, by M. Senek, S. Robertson, L. Darlison, et al (BMJ Open Respiratory Research, 2022).

The study

• Authors: M. Senek, S. Robertson, L. Darlison, L. Creech, A. Tod
• Journal: BMJ Open Respiratory Research
• Published: 2022;9(1)
• Cited by: 7 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Objectives: Malignant mesothelioma is an aggressive malignancy of mesothelial surfaces, most commonly those of the pleura. The aim of this study was to understand, using a national questionnaire, the gendered care experiences of patients with malignant pleural mesothelioma (MPM).Patients were asked about their experience of the diagnostic process, about information clarity, health care professionals' knowledge, general practitioner support and overall satisfaction with care received.

Setting: Recruitment of patients was carried out in three UK countries (England, Wales and Scotland) via mesothelioma clinical nurse specialists.

Participants: In total, 503 patients completed the questionnaire. 460 had MPM, the remainder had other types of mesothelioma. In accord with the study protocol, only the MPM patients were included in this study.Primary and secondary measures were: (1) time from symptom to diagnosis, (2) satisfaction with the diagnosis and treatment, and (3) quality of life and well-being.

Results: There were gender differences in time from symptom to diagnosis. The time from symptom to diagnosis was significantly longer for women than men (median=152 days vs men=92 days, p=0.01). Lack of a verified source of exposure to asbestos was a hindrance to private treatment access for women (95% of those that access private treatment are men). Patients were five times more likely to be satisfied if they thought that the doctors knew enough about their condition (OR=4.4, p=0.001) and nearly three times more likely to be satisfied if information was presented in a sensitive way (OR=2.8,p=0.01).

Conclusions: This study has several implications for clinical practice. Our findings suggest that the diagnostic time in women might be reduced by reviewing diagnostic processes including occupational history taking, and by revising the occupational risk of mesothelioma categorisation.

© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

In plain English

This study analysed a UK national patient questionnaire (the MORE survey), collected in May 2019 through mesothelioma clinical nurse specialists, to compare men and women with malignant pleural mesothelioma. Of 503 respondents, 460 had pleural mesothelioma: 376 men, 81 women and three who did not give gender. Asked about exposure, 76.4% of men and 28.9% of women said they had been exposed to asbestos through work. Time from first symptom to diagnosis was longer for women (median 152 days) than men (92 days), p=0.01. Most patients (80%) were satisfied with the diagnostic process, with no statistically significant gender differences. Satisfaction was more likely when patients felt health professionals knew enough about their condition (odds ratio 4.43) or that the diagnosis was delivered sensitively (2.81). Of 67 patients whose private treatment costs were covered through a legal claim, 64 were men and 3 were women. The authors concluded that care can be improved, and gender differences reduced, by reviewing diagnostic processes, including occupational history taking, and occupational risk categorisation. The occupation question was asked only of those who knew or had proven work exposure.

We wrote this plain-English summary from the full article with the help of AI, and a second AI model checked each sentence against the article. It is not the authors' wording; the abstract and the article are their own account.

What the study did and found

• Design: Cross-sectional secondary analysis of a national patient questionnaire (the Mesothelioma, Outcomes, Research and Experience (MORE) survey)
• Who was studied: 460 patients with malignant pleural mesothelioma, out of 503 mesothelioma patients who completed the questionnaire. They were recruited in May 2019 through 25 mesothelioma clinical nurse specialists in England (410), Scotland (26) and Wales (11), with 13 not giving a location. The group was 376 men and 81 women; 3 did not report gender.
• Exposure: Self-reported asbestos exposure; no fiber types are given. 76.4% of men and 28.9% of women reported exposure through work. 18.6% of women and 3.9% of men reported exposure through partners, for example by washing their clothes. Occupations were grouped into direct handling of asbestos (builders, electricians, carpenters, laggers, plumbers) and working environment (teachers, doctors, nurses, administrative and secretarial staff).
• Main results:
  • Time from symptom to diagnosis was significantly longer for women than for men: median 152 days vs 92 days, p=0.01.
  • There were no women in the direct handling occupational categories.
  • About 80% of patients were satisfied with the diagnostic process. There were no statistically significant differences between men and women in satisfaction and overall experience during diagnosis.
  • In logistic regression, the factor with the biggest effect on satisfaction with the diagnostic process was the perceived knowledge of health professionals (OR=4.43, p=0.001).
  • Perceiving that the diagnosis was delivered sensitively was the second strongest factor (OR=2.81, p=0.01). The number of times patients had to see their GP was third (OR=2.166, p=0.039).
  • The highest dissatisfaction rate during diagnosis, 55.9%, was with GP support.
  • 107 patients reported that they had paid, or would be expected to pay, for private treatment. 12 of them (11%) were women.
  • Of 67 patients whose non-NHS-funded treatment costs had been covered as part of a legal claim, 64 were men and 3 were women (p=0.01).
  • Median self-reported quality-of-life score (EQ5D, 0 to 100 scale) was significantly higher in women (74) than in men (70), p=0.04.
• The authors' conclusion: The authors concluded that care of patients with mesothelioma can be improved, and gender differences reduced, by reviewing diagnostic processes, including occupational history taking, and by reviewing how occupational risk of mesothelioma is categorised.
• Limitations the authors state:
  • Patients were asked to list their occupation only if they knew, or had proven, that they had been exposed at work. The authors note this is problematic because environmental exposure is harder to know or prove.
  • The data lacked information on childhood asbestos exposure, previous medical history, exact geographical location and partners' work in high-risk areas.
  • There was no information on disease progression or survival.
  • A higher proportion of respondents had active treatment than in the National Mesothelioma Audit. The sample may therefore be biased towards patients with better performance status and less advanced disease.
  • The higher quality-of-life score after surgery may reflect selection bias, because fitter patients are more likely to be chosen for surgery.

Topics

The National Library of Medicine indexes this study under subjects our site covers: Mesothelioma.

Medical terms in this study, explained in our Lexicon: Pleural Mesothelioma, Malignant Mesothelioma, Pleura, Mesothelioma, Quality of Life, Occupational History.

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• Gender and the experiences of living with mesothelioma: A thematic analysis — S. Ejegi-Memeh, S. Robertson, et al. (2021)
• Asbestos-related disease in railroad workers. A cross-sectional study — L.C. Oliver, E.A. Eisen, et al. (1985)

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