Recommendations for improving follow-up care for patients with mesothelioma: a qualitative study comprising documentary analysis, interviews and consultation meetings

Our plain-English summary of Recommendations for improving follow-up care for patients with mesothelioma: a qualitative study comprising documentary analysis, interviews and consultation meetings, by C. Henshall, Z. Davey, H. Walthall, et al (BMJ Open, 2021).

The study

• Authors: C. Henshall, Z. Davey, H. Walthall, H. Ball, M. Shahidi, J. Park, N. Rahman
• Journal: BMJ Open
• Published: 2021;11(1):e040679
• Cited by: 8 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Objectives: The study aim was to explore experiences of patients with pleural mesothelioma of follow-up care in three National Health Service (NHS) Trusts to develop recommendations for practice.

Design: The study design was qualitative and comprised three interlinked phases: a documentary analysis, interviews and consultation meetings. Altheide and Johnson's Analytic Realism theoretical framework guided the thematic data analysis process.

Setting: The study was conducted in three NHS Trusts in South England. Two were secondary care settings and the third was a tertiary centre.

Participants: The secondary care trusts saw 15-20 patients with new mesothelioma per year and the tertiary centre 30-40. The tertiary centre had a designated mesothelioma team. Twenty-one patients met the inclusion criteria: >18 years, mesothelioma diagnosis and in follow-up care. Non-English speaking participants, those unable to provide written informed consent or those whom the clinical team felt would find participation too distressing were excluded. All participants were white, 71% were 70-79 years old and 71% were men. Three consultation meetings were conducted with key stakeholders including mesothelioma nurse specialists, patients with mesothelioma, carers and local clinical commissioning group members.

Main Outcome Measures: Specific outcomes were to gain a detailed understanding of mesothelioma follow-up care pathways and processes and to develop coproduced recommendations for practice.

Results: Mesothelioma pathways were not always distinct from lung cancer care pathways. All trusts provided follow-up information and resources but there was varied information on how to access local support groups, research or clinical trial participation. Five themes were developed relating to people; processes; places; purpose and perception of care. Coproduced recommendations for improving mesothelioma follow-up pathways were developed following the consultation meetings.

Conclusions: This study has developed recommendations which identify the need for patients with pleural mesothelioma to access consistent, specialist, streamlined mesothelioma care, centred around specialist mesothelioma nurses and respiratory consultants, with input from the wider multidisciplinary team.

© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

In plain English

This qualitative study looked at how people with pleural mesothelioma experienced follow-up care at three National Health Service (NHS) Trusts in South England. The authors reviewed each trust's service documents. They interviewed 21 patients: 15 men and 6 women, all white, 15 of them aged 70–79. They held three consultation meetings with 35 stakeholders, including specialist nurses, patients, carers and commissioning group members. The documents showed that mesothelioma pathways were not always separate from lung cancer pathways. Only one trust had a mesothelioma specialist nurse on site, and information about research, trials and support groups varied between trusts. The interviews produced five themes: people, process, place, purpose and perception of care. Most participants viewed their care positively. The authors concluded that patients need consistent, specialist, streamlined care, centred where possible on specialist mesothelioma nurses and respiratory consultants, with oncology-led or formalised shared care considered when this is not feasible. They noted that more of their participants had received active treatment (81%) than in the most recent National Mesothelioma Audit (48%). They suggested the high satisfaction may partly reflect the higher level of specialist care this group received.

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 in three linked phases: analysis of service documents, one-off semistructured interviews with patients, and consultation meetings with stakeholders
• Who was studied: 21 patients with pleural mesothelioma in follow-up care at three NHS Trusts in South England (two district general hospitals and one tertiary centre). 15 were men and 6 women, all were white, 15 were aged 70–79, and 11 came from the tertiary centre. Of 32 eligible patients who agreed to be contacted, 21 took part. In addition, 35 stakeholders attended three consultation meetings.
• Exposure: Not an exposure study. It examined follow-up care pathways for patients already diagnosed with pleural mesothelioma; asbestos exposure was not measured.
• Main results:
  • At the three trusts, mesothelioma treatment pathways were not always distinct from the lung cancer care pathway
  • Only one of the three trusts had a mesothelioma specialist nurse based on site
  • The trusts varied in how much information they gave patients about research and clinical trials and about local support groups
  • 17 of the 21 interviewed patients (81.0%) had received chemotherapy and/or surgery
  • Analysis of the interviews produced five overarching themes: People, Process, Place, Purpose and Perception of Care
  • Interviewed patients with the most consistent healthcare contacts reported high trust in their named consultant and specialist nurse, and satisfaction with care
  • The consultation meetings produced a 'pyramid of care' that places a named mesothelioma specialist nurse and a mesothelioma specialist respiratory consultant at the top
  • In their discussion, the authors wrote that care should be centred, where possible, on mesothelioma specialist nurses and respiratory consultants, and that input from multidisciplinary team members is essential
  • The authors added that when care centred on these specialists is not feasible, oncology-led or formalised shared care approaches should also be considered
• The authors' conclusion: The authors concluded that their recommendations identify a need for patients with pleural mesothelioma to access consistent, specialist, streamlined mesothelioma care. They said this care should be centred, where possible, on specialist mesothelioma nurses and respiratory consultants, with input from the wider multidisciplinary team. They added that oncology-led or formalised shared care should be considered when this is not feasible.
• Limitations the authors state:
  • Six interview participants (29%) had been diagnosed more than 36 months earlier, much longer than the median survival of 8–14 months
  • More participants had received active treatment (81%) than in the most recent National Mesothelioma Audit (48%)
  • The high satisfaction found may partly reflect the higher level of specialist care this group received

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, Pleural Mesothelioma, Informed Consent, Lung Cancer, Clinical Trial, Multidisciplinary Team.

Related studies

• Improving mesothelioma follow-up care in the UK: a qualitative study to build a multidisciplinary pyramid of care approach — Z. Davey, C. Henshall (2021)
• Understanding clinical decision-making in mesothelioma care: a mixed methods study — C. Henshall, P. Dawson, et al. (2022)
• Variation in number of general practitioner consultations before hospital referral for cancer: findings from the 2010 National Cancer Patient Experience Survey in England — G. Lyratzopoulos, R.D. Neal, et al. (2012)
• Emergency diagnosis of cancer and previous general practice consultations: insights from linked patient survey data — G.A. Abel, S.C. Mendonca, et al. (2017)
• CANcer BEhavioural nutrition and exercise feasibility trial (CanBenefit); phase I qualitative interview findings — F. Swan, H. Chen, et al. (2021)
• What is the role of a specialist regional mesothelioma multidisciplinary team meeting? A service evaluation of one tertiary referral centre in the UK — A.C. Bibby, K. Williams, et al. (2016)

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