Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers

Our plain-English summary of Living beyond expectations: a qualitative study into the experience of long-term survivors with pleural mesothelioma and their carers, by M. Johnson, P. Allmark, A. Tod (BMJ Open Respiratory Research, 2022).

The study

• Authors: M. Johnson, P. Allmark, A. Tod
• Journal: BMJ Open Respiratory Research
• Published: 2022;9(1)
• Cited by: 3 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Background: Malignant pleural mesothelioma (MPM) is characterised by poor prognosis and limited treatment options. However, a minority of patients can survive well beyond these bleak estimates. Little is known about the specific experiences and needs of long-term survivors and families.

Study Purpose: The study aimed to gain in-depth understanding of the experiences of patients diagnosed with MPM 3 or more years, along with their main carer, and to determine the care and support needs of this group.

Participants And Setting: People diagnosed with MPM 3 or more years were recruited via asbestos and mesothelioma social media and support groups. Potential participants were asked to identify someone who acted as their main carer.

Method: The study employed a cross-sectional qualitative interview design. A topic guide aided a conversational interview style, conducted remotely and recorded. Patient and carer pairs were interviewed jointly when possible, but were given an option for separate interviews if preferred. Fifteen patients, with 14 identifying a main carer, consented to participation.

Analysis: Recorded interviews were transcribed verbatim, and then anonymised by the interviewer. Framework analysis was used to analyse the data iteratively and to develop final themes.

Findings: Three themes were developed. Participants 'Living beyond expectations' remained acutely aware that MPM was incurable, but developed a range of coping strategies. Periods of disease stability were punctuated with crises of progression or treatment ending, straining coping. 'Accessing treatment' was important for patients and carers, despite the associated challenges. They were aware options were limited, and actively sought new treatments and clinical trials. 'Support needs' were met by healthcare professionals, voluntary groups and social media networks.

Conclusions: Managing patients via regional MPM multidisciplinary teams, facilitating equal access to treatment and trials, could reduce patient and carer burden. Greater awareness and support around crisis points for this group could improve care.

© 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 qualitative interview study looked at people who had lived with malignant pleural mesothelioma for 3 or more years after diagnosis, and at their main carers. Fifteen patients (seven men and eight women, median age 73) were recruited through mesothelioma and asbestos support groups and social media, and 14 named a carer. Patients had been diagnosed for a median of 4 years (range 3 to 12). Interviews were held by videoconference between June and December 2021. The study did not examine asbestos exposure. All participants understood the disease was incurable. Long stable periods were broken by crises such as bad scan results, new symptoms or the end of treatment. Many actively sought treatment, and nearly half had been on a clinical trial. Most had not received specialist palliative care, and almost no carers had used support aimed at carers. The authors concluded that routine involvement of regional mesothelioma teams would help address a perceived 'postcode lottery' in treatment. They noted that recruiting through support groups and social media limits how widely the findings apply, and that female patients were over-represented.

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: Qualitative study using in-depth interviews, analysed with the Framework method
• Who was studied: Fifteen people diagnosed with malignant pleural mesothelioma 3 or more years earlier (seven male, eight female; median age 73 years, range 38 to 79; median 4 years since diagnosis, range 3 to 12), recruited from 20 eligible responders. Fourteen named a main carer. Participants lived from Scotland to Devon, plus one couple in continental Europe. Interviews were held June to December 2021.
• Exposure: Not studied. The study concerned living with a diagnosis of malignant pleural mesothelioma, not asbestos exposure.
• Main results:
  • The researchers developed three themes from the interviews: 'Living beyond expectations', 'Accessing treatment' and 'Support Needs'.
  • All participants understood the disease was incurable. Several had been given prognosis estimates at diagnosis of 3 to 18 months.
  • Unfavourable scans, new symptoms or having to stop treatment disrupted periods of stability and brought acute uncertainty.
  • Many participants actively sought treatment. Nearly half had been on a clinical trial, and three more hoped to be recruited soon.
  • Long-term treatment effects such as pain, neuropathy and skin reactions troubled several participants. None identified specific care aimed at these symptoms.
  • All patients had access to a mesothelioma specialist nurse. Most had not received specialist palliative care.
  • Only one carer had accessed support aimed at carers.
  • Approaches differed widely between treatment centres. One carer described this as a 'postcode lottery'.
• The authors' conclusion: The authors concluded that routine involvement of regional mesothelioma multidisciplinary teams would help address the perceived postcode lottery in treatment. They also called for further research on support around crisis points and for carers.
• Limitations the authors state:
  • Only people linked to support groups or online resources who chose to respond were included, which limits how widely the findings apply.
  • Female patients were over-represented. The authors noted this gender bias may have influenced the findings.
  • Relatively few carer-specific issues came up in the interviews. The authors said future studies should focus on carers' needs.

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, Prognosis, Mesothelioma, Clinical Trial, Multidisciplinary Team.

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