'It's all bad news': the first 3 months following a diagnosis of malignant pleural mesothelioma

Our plain-English summary of 'It's all bad news': the first 3 months following a diagnosis of malignant pleural mesothelioma, by A. Arber, L. Spencer (Psycho-oncology, 2013).

The study

• Authors: A. Arber, L. Spencer
• Journal: Psycho-oncology
• Published: 2013;22(7):1528-33
• Cited by: 40 articles, as counted by NIH iCite
• Read it: PubMed · Publisher

Abstract

Objective: This study explores patient's experience during the first 3 months following a diagnosis of malignant pleural mesothelioma.

Methods: This study uses a grounded theory approach with semi-structured, face-to-face interviews with 10 patients during the first 3 months following diagnosis.

Results: The key concept that emerged from the data was this: Uncertainty and lack of control leading to emotional, physical and psychosocial distress. Three themes informed the key concept: ' it's all bad news', 'good and bad days' and strategies of amelioration. Patients worked with a short-term perspective on their illness but worried about the long-term outcome and the speed of their deterioration.

Conclusions: Patients receive insufficient psychosocial support during the first 3 months following diagnosis. An early palliative care referral would improve support and referral strategies during the first 3 months of the disease.

Copyright © 2012 John Wiley & Sons, Ltd.

In plain English

This qualitative interview study used a grounded theory approach. Ten patients (eight men and two women) with malignant pleural mesothelioma, recruited in 2008–2009 from two hospital trusts in the South of England, were interviewed during the first 3 months after diagnosis. The article reports no measurements of asbestos exposure. The central finding the authors described was uncertainty and lack of control leading to emotional, physical and psychosocial distress. It was built from three themes: 'it's all bad news', 'good days and bad days' and 'strategies of amelioration' (ways of coping). Half the participants reported sweating. None were breathless at rest during the interview, but they described some breathlessness on exertion. Those reporting pain described mild aches or soreness in the chest. All felt well informed about claiming compensation, though one woman felt it was raised too soon after diagnosis. Only two had been referred to palliative care. The authors concluded that palliative care referrals were unusual in these first months and that patients had to find their own ways to cope. They noted the small sample, drawn from an affluent part of the UK.

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 a grounded theory approach, with semi-structured, face-to-face, open-ended interviews
• Who was studied: 10 patients (eight men and two women), aged 56 to 82 according to the table, recruited during 2008–2009 from two acute hospital trusts in the South of England and interviewed within the first 3 months after diagnosis of malignant pleural mesothelioma. Two further patients were too ill to be interviewed.
• Exposure: The article reports no measurements of asbestos exposure. The table lists occupations, including retired plumber, retired builder, retired heating engineer and electrician. One participant described asbestos on work clothes that his wife had washed.
• Main results:
  • The key concept the authors drew from the interviews was uncertainty and lack of control leading to emotional, physical and psychosocial distress in the first 3 months after diagnosis.
  • Three themes supported the key concept: 'it's all bad news', 'good days and bad days' and strategies of amelioration.
  • Half of the 10 participants experienced sweating.
  • No participant was breathless at rest during the interview, but participants described some breathlessness on exertion.
  • Participants who reported pain described mild pain such as an ache, tenderness or soreness in the chest.
  • All participants felt well informed about the legal aspects of the condition and how to claim compensation. One participant (Anita) felt that being told about compensation at diagnosis was too early.
  • Few participants had a palliative care referral. Only Anita and Gill had been referred, and none of the other participants reported a referral.
• The authors' conclusion: The authors concluded that uncertainty and loss of control were key features of the patient experience and caused immense distress. They concluded that palliative care referrals were unusual in the first 3 months, and that patients had to find their own strategies and resources to cope at this early stage.
• Limitations the authors state:
  • Small sample size.
  • Participants lived in an affluent part of the UK, so the findings may not apply to patients in other phases of the illness or in other parts of the UK.
  • Sampling was affected by difficulty recruiting patients because of small numbers at the two hospital sites.

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, Palliative Care.

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