Living with mesothelioma. A literature review

Our plain-English summary of Living with mesothelioma. A literature review, by S. Moore, L. Darlison, A.M. Tod (European Journal of Cancer Care, 2010).

The study

• Authors: S. Moore, L. Darlison, A.M. Tod
• Journal: European Journal of Cancer Care
• Published: 2010;19(4):458-68
• Type of article: Review
• Cited by: 53 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

Mesothelioma is an asbestos-related cancer that affects mainly the pleura. World-wide incidence is increasing and set to rise for some time particularly in developing countries. Mesothelioma is uniformly fatal and often associated with difficult symptoms. The purpose of this review is to identify what is known about the experience of people living with mesothelioma. A literature search identified 13 papers covering qualitative studies, patient-reported quality of life data collected as part of a clinical trial, symptoms and survey of patients and carers. The findings suggest the impact of mesothelioma is multidimensional on: physical symptoms (especially pain, breathlessness, fatigue, cough, sleep disturbance, appetite loss and sweating), emotional functioning (anxiety, depression, fear and isolation), social consequences (changes in roles and relationships) and interventions (the necessity of frequent anti-cancer treatments and admissions for symptom control). The impact on family members is significant also. Although limited, these findings provide an important insight into the impact of mesothelioma on patients and family members and suggest areas where service provision may fail to meet their needs. Finally, the review highlights an urgent need for further research to more fully understand the experience of living with mesothelioma and identify the specific needs of patients and family members.

In plain English

This was a literature review. The authors searched six databases in December 2008 for English-language papers from 1980 to 2008 on the experience of living with mesothelioma, and added a 2009 British Lung Foundation survey. They included 13 papers: five interview studies, five papers reporting quality of life from clinical trials before treatment began, two papers on symptoms, and the survey of 83 patients and 98 carers in the UK. In the interview studies, pain and breathlessness were the two main symptoms. In the survey, 67% of patients reported anxiety and 52% depression. Carers reported higher rates, including 89% anger and 84% anxiety. Interview studies described shock, fear, changed roles, family carers who felt unsupported, and unplanned hospital admissions. The authors concluded that mesothelioma affects patients' and families' physical, emotional and social well-being and that complex care needs go unmet. They cautioned that the studies were few and small, that the trial patients were fit enough for chemotherapy, and that most survey carers were bereaved.

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: Literature review. The authors searched six electronic databases (AMED, BNI, CINAHL, EMBASE, Medline, PsycINFO) in December 2008, covering 1980 to 2008, and later added a 2009 survey.
• Who was studied: The review included 13 papers. Five were qualitative interview studies with 77 patients, 36 family members or lay carers and 37 healthcare professionals in the UK, USA and Australia. Five papers reported baseline quality of life data from clinical trials; one of them (Hollen et al. 2004) analysed patients from two trials. Two papers reported symptom data. The article states that these seven quantitative papers covered 1641 patients in Europe, Australia, Canada and the USA. The thirteenth paper was a British Lung Foundation survey of 83 patients and 98 carers in the UK.
• Exposure: The review was about the experience of living with mesothelioma, mainly pleural. It did not study fiber types or exposure doses. The article notes in background that mesothelioma is usually caused by asbestos exposure.
• Main results:
  • In the qualitative studies reviewed, pain and breathlessness were the two main symptoms.
  • In one reviewed trial (Muers et al. 2008, 409 patients with pleural mesothelioma), the symptom most often reported as moderate or severe before chemotherapy was shortness of breath (36%). Tiredness followed at 32% and pain at 29%.
  • In Hollen et al. (2004), covering 495 patients with pleural mesothelioma from two clinical trials, fatigue (94%) was the most prevalent symptom at baseline. Dyspnoea (89%), appetite loss (87%) and pain (85%) followed.
  • The British Lung Foundation survey included 83 patients and 98 carers in the UK.
  • In the British Lung Foundation survey, patients reported anxiety (67%), depression (52%), fear (51%) and isolation (41%). Carers reported anger (89%), anxiety (84%), depression (80%), isolation (79%) and fear (57%).
  • In the same survey, 71% of patients reported feeling peace or acceptance, compared with 23% of carers.
  • In the interview studies, patients and family members reported shock, disbelief and numbness about the diagnosis, along with isolation, anger and fear of the future.
  • In Lebovits et al. (1983), 65% of patients with asbestos exposure denied anger towards the asbestos industry.
  • Family carers, usually the spouse, took on a significant caregiving role. They described feeling helpless and unsupported by healthcare professionals.
  • In the British Lung Foundation survey, 73% of patients and 35% of carers reported feeling well informed during investigations.
  • Gaps in care and in support for carers led to unscheduled, urgent hospital admissions for some patients (Hawley et al. 2004). These sometimes came close to death.
• The authors' conclusion: The authors concluded that their findings were only a glimpse of the experience of living with mesothelioma. They also concluded that there was distinct evidence of the disease's multidimensional impact on patients' and family members' physical, emotional and social well-being, and of unmet, complex care needs. They called for urgent further qualitative research.
• Limitations the authors state:
  • Only a small number of relevant studies were found, and they included small numbers of patients and family members. The findings may therefore not represent all patients and families.
  • Two of the qualitative studies (Lebovits et al. 1981, 1983) are dated. They may not reflect current attitudes towards industrial disease and lawsuits.
  • The British Lung Foundation survey was given mainly through websites and asbestos support groups, so how representative it is is unclear. Most carers (76%) were bereaved at the time, which may have influenced their answers.
  • The trial quality of life data came from patients deemed fit enough for chemotherapy. These patients may be fitter than mesothelioma patients overall.
  • The quality of life tools used were originally developed for lung cancer, so some symptoms such as sweating may have been under-assessed. The studies also presented their data differently, which makes comparison difficult.
  • The data mostly came from single time points. No data showed how the disease affects people's lives over time.

Topics

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

Medical terms in this study, explained in our Lexicon: Mesothelioma, Pleura, Quality of Life, Clinical Trial.

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