Communication of a mesothelioma diagnosis: developing recommendations to improve the patient experience

Our plain-English summary of Communication of a mesothelioma diagnosis: developing recommendations to improve the patient experience, by B.H. Taylor, C. Warnock, A. Tod (BMJ Open Respiratory Research, 2019).

The study

• Authors: B.H. Taylor, C. Warnock, A. Tod
• Journal: BMJ Open Respiratory Research
• Published: 2019;6(1):e000413
• Cited by: 24 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Background: Malignant pleural mesothelioma (MPM) is an aggressive cancer linked to asbestos exposure and inhalation. As with other cancers, receiving a diagnosis of MPM is challenging and distressing. Particular challenges are associated with communicating a diagnosis of MPM, including explaining the disease and its prognosis, treatment options and legal and financial implications. Receiving A Diagnosis Of Mesothelioma (RADIO Meso) aimed to understand the experience of communicating a diagnosis of MPM from the perspective of patients, family carers and health professionals.

Methods: This qualitative study comprised 31 individual interviews with patients, family carers and health professionals. This was followed by two group interviews (n=42) and an electronic consultation exercise (n=39).

Results: This study provides unique insight into the mesothelioma diagnostic experience of patients, family carers and health professionals. Key findings include the importance of regarding diagnosis as a process, and provision of continuity and consistency. The clinical nurse specialist and effective multidisciplinary team working provided vital contributions to successful mesothelioma diagnostic communication. Facilitators to diagnostic communication included honesty and timeliness in communication, partnership working and maintaining a patient-centred approach. Challenges to enhancing mesothelioma diagnosis communication included accessing ongoing training, ensuring a suitable clinical environment and being able to allocate appropriate time.

Conclusion: The RADIO Meso study highlights factors that influence the communication of a diagnosis of MPM from the perspectives of individual patients and family carers. These findings provide the basis for a set of recommendations that can be used by health professionals to improve the MPM diagnostic experience.

In plain English

This UK qualitative study, called RADIO Meso, examined how a diagnosis of malignant pleural mesothelioma is communicated, from the viewpoint of patients, family carers and health professionals. It did not study asbestos exposure. The researchers held 31 individual interviews with six patients, nine family carers, 14 lung cancer nurse specialists, one doctor and one support worker. These were followed by two group interviews with 42 people and an electronic consultation with 39 responses. Patients and carers described shock at the diagnosis, and some could not take in further information. Participants valued continuity and consistency, access to a specialist nurse, a patient-centred approach, enough time and a quiet, private room. Most patients preferred direct, honest information that still maintained hope. Staff reported limited clinic space and a lack of follow-up communication training. The authors concluded that communicating a diagnosis should be seen as a process rather than one episode of care, and they developed recommendations with Mesothelioma UK. They noted that the sample was small and included only one doctor, and that claims about how widely the findings apply need caution.

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: individual interviews, then two group interviews, then an electronic consultation exercise on draft recommendations
• Who was studied: UK participants. There were 31 individual interviews: six patients (three men, three women), nine family carers (six daughters, three female partners), 14 lung cancer nurse specialists, one respiratory consultant and one support worker. There were also two group interviews with 42 participants (27 at a Mesothelioma UK patients and carers day, 15 at a Mesothelioma clinical nurse specialist meeting) and 39 consultation responses (7 interview participants, 32 Mesothelioma UK service users). Data were collected between March 2017 and April 2018.
• Exposure: No asbestos exposure was studied. The subject was the experience of communicating a diagnosis of malignant pleural mesothelioma.
• Main results:
  • Patients and family carers reported shock and devastation at the diagnosis. For some, this meant they could not take in further information during the consultation.
  • Continuity and consistency in what was said, and by whom, emerged as a key factor in good communication and care.
  • Having a lung cancer nurse specialist accessible throughout the diagnostic pathway was reported to improve the diagnosis experience.
  • All specialist nurse and medical participants had attended advanced communication training, but concern was expressed about the absence of follow-up training or supervision.
  • Health professional participants all agreed that keeping the patient at the centre improved diagnostic communication.
  • Patients and carers emphasised a quiet, private environment, but many staff reported difficulty providing one because of limited clinic space.
  • Allocating appropriate time was seen as essential to good communication of the diagnosis.
  • The majority of patients preferred direct and honest information while hope was maintained.
  • Patients and families reported that knowing a multidisciplinary team had reviewed the case gave them confidence.
  • The study team worked with Mesothelioma UK to develop recommendations for health professionals on communicating the diagnosis.
• The authors' conclusion: The authors concluded that communicating a mesothelioma diagnosis should be regarded as a process rather than a single episode of care.
• Limitations the authors state:
  • Only one doctor volunteered to take part.
  • The sample was small.
  • The study did not aim to produce statistical data, and caution is needed in generalising the findings.

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, Pleural Mesothelioma, Asbestos Exposure, Prognosis, Multidisciplinary Team.

Related studies

• A survey of patient and caregiver experience with malignant pleural mesothelioma — A. Warby, H.M. Dhillon, et al. (2019)
• "It sort of hit me like a baseball bat between the eyes": a qualitative study of the psychosocial experiences of mesothelioma patients and carers — S. Girgis, A. Smith, et al. (2019)
• Managing malignant pleural mesothelioma: experience and perceptions of health care professionals caring for people with mesothelioma — A. Warby, H.M. Dhillon, et al. (2019)
• Channels and vehicles of communication: the asbestos awareness campaign — V.S. Freimuth, J.P. Van Nevel (1993)
• Asbestos disease risk communication conducted by the New Jersey Department of Health — M. Stanbury, G. Solice-Sample, et al. (1993)
• Experiences of a state-sponsored notification and screening program for asbestos workers — A.P. Bender, A.N. Williams, et al. (1993)

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