What are the psychological effects of mesothelioma on patients and their carers? A scoping review

Our plain-English summary of What are the psychological effects of mesothelioma on patients and their carers? A scoping review, by V. Sherborne, J. Seymour, B. Taylor, et al (Psycho-oncology, 2020).

The study

• Authors: V. Sherborne, J. Seymour, B. Taylor, A. Tod
• Journal: Psycho-oncology
• Published: 2020;29(10):1464-1473
• Cited by: 18 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

Objective: Despite recent advances in research, malignant mesothelioma remains an incurable and devastating disease, typically bringing shock and emotional distress to patients and carers. Little research has addressed the psychological impact on either group. This scoping review examines the current state of evidence on the psychological effects of mesothelioma on patients and carers, and identifies areas for further research.

Methods: We searched PubMed, PsychINFO, CINAHL, the Cochrane Library and Web of Science for English-language peer-reviewed research articles published 1981 to 2019 reporting studies focussing on the psychological effects of mesothelioma on patients and carers. Following data extraction and quality appraisal, reflexive thematic analysis was used to identify themes.

Results: Seventeen articles met the inclusion criteria. Carers' experiences were generally amalgamated with patients'. Three themes were developed. The Passing of Time included the importance of timing of interventions; delays in the medical journey; awareness of different time-phases in mesothelioma; and uncertainty/certainty. Dealing with Difficult Feelings reflected ubiquitous negative emotions, feelings about identity and states of being and associated coping strategies. Craving Good Communication covered issues related to sharing of information and to positive/negative aspects of communication.

Conclusions: Though limited, the evidence indicates that mesothelioma, with its high symptom-burden, incurability, rarity and asbestos-related causation, leads to complex and inter-relating psychological effects on patients and carers. These effects are both negative and positive. The sparse literature gives a partial picture and demonstrates an urgent need for more nuanced research. Studies exploring the experiences of specific groups are recommended, with particular attention required to carers.

© 2020 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

In plain English

This was a scoping review. In May 2019 the authors searched five databases for English-language research, published from 1981, on the psychological effects of mesothelioma on patients and carers. Database searches yielded 449 articles after duplicate removal; reference lists and Google Scholar added ten; 16 qualified, and one published in December 2019 was added later. The 17 were eleven qualitative studies, two quantitative, three literature reviews and one combining a study with a review. Most were rated unclear for risk of bias. The authors identified three themes: the passing of time, dealing with difficult feelings, and craving good communication. The included studies described shock, anxiety and distress, some linked to awareness of past asbestos exposure, and some patients felt anger toward employers. One study (Henson et al.) reported that mesothelioma patients had the highest suicide risk of all cancer types in the first six months after diagnosis, 8.61-fold compared with the general population. No study explored carers' experience separately. The authors concluded that the limited evidence indicates complex psychological effects, both negative and positive, and called for more research.

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: Scoping review of published research, using reflexive thematic analysis to identify themes
• Who was studied: 17 published articles about mesothelioma patients and carers, published 1981 to 2019: eleven qualitative, two quantitative, three literature reviews, and one combined qualitative study and review. They came from 449 database records (after duplicate removal) found in searches of PubMed, PsychINFO, CINAHL, the Cochrane Library and Web of Science in May 2019, plus ten articles from reference lists and Google Scholar, plus one article published in December 2019. The qualitative studies were from the UK (4), Australia (1), Italy (2), Japan (2) and the USA (3), with 5 to 112 participants each.
• Exposure: Not an exposure study. The review examined the psychological effects of having mesothelioma, covering all disease types. No fiber types were analysed.
• Main results:
  • Database searches yielded 449 articles after duplicate removal, of which 414 were excluded on title or abstract. Reference lists and Google Scholar supplied ten more full-text articles. After eligibility criteria were applied to the full texts, 16 articles remained, and one further article published in December 2019 was added, for 17 in total.
  • Quality: three qualitative articles were rated low risk of bias and the rest unclear. Of the quantitative studies, Henson et al. was rated low and Dooley et al. unclear. All three reviews were rated unclear.
  • The theme 'The Passing of Time' appeared in all 17 articles. Diagnosis was a significant time-point in 14 papers.
  • Included studies identified retrospective awareness of personal risk from asbestos exposure as a cause of anxiety and distress.
  • In the included study by Henson et al., covering people in England who died by suicide after a cancer diagnosis, mesothelioma patients had the highest suicide risk of all cancer types in the first six months after diagnosis: 8.61-fold compared with the general population.
  • In the included study by Dooley et al., of 49 patients suing their employer, all participants reported significant traumatic stress symptoms, co-morbid with increased depression and anxiety.
  • All 17 articles described difficult feelings and coping strategies. For some patients, complex medico-legal matters led to anger and a sense of betrayal toward employers.
  • Communication issues were reported by 16 articles. Inept or thoughtless delivery of information caused distress and hopelessness.
  • No included study explored carers' experience on its own. Where carers were included, they were mixed in with patients.
  • The included studies mostly emphasised negative effects.
• The authors' conclusion: The authors concluded that, though limited, the evidence indicates mesothelioma leads to complex and inter-relating psychological effects on patients and carers, both negative and positive. They called for more nuanced research, including on carers.
• Limitations the authors state:
  • A single researcher carried out most of the review.
  • Studies with psychological effects as secondary outcomes were not included.
  • Grey literature and on-going research were not searched.
  • Inter-rater reliability measures were not undertaken.
  • Most included qualitative studies excluded people with psychiatric diagnoses or those at risk of distress, so people with more psychological difficulties are likely missing from the evidence.

Topics

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

Medical terms in this study, explained in our Lexicon: Mesothelioma, Causation.

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