Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review

Our plain-English summary of Understanding the palliative care needs and experiences of people with mesothelioma and their family carers: An integrative systematic review, by M. Harrison, C. Gardiner, B. Taylor, et al (Palliative Medicine, 2021).

The study

• Authors: M. Harrison, C. Gardiner, B. Taylor, S. Ejegi-Memeh, L. Darlison
• Journal: Palliative Medicine
• Published: 2021;35(6):1039-1051
• Type of article: Systematic review
• Cited by: 19 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Background: People with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness.

Aim: To describe the palliative care needs and experiences of people with mesothelioma and their family carers.

Design: Integrative systematic review with narrative synthesis (PROSPERO: CRD42020190115).

Data Sources: MEDLINE, CINAHL, PsycINFO and the Cochrane Library were searched for articles published between 01 January 2000 and 10 May 2020. Articles were included if they presented empirical studies or comprehensive reviews including information about the palliative care needs and experiences of people with mesothelioma and their family carers.

Results: The search yielded 508 articles, 14 were included in the analysis. A cross cutting theme of 'uncertainty' was identified encompassing five themes: (1) organisation and co-ordination of services, (2) communication and information needs, (3) management of care needs and high symptom burden, (4) consideration of the impact of seeking compensation and (5) family carer needs. Our findings demonstrate that people with mesothelioma want a co-ordinated, team-based approach to palliative care with a named point of contact. Whilst carers value and benefit from early referral to specialist palliative care, this does not necessarily reflect the outcomes and views of patients.

Conclusion: The evidence base around the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. The results of this review support the need to develop a greater understanding about the role non-specialist palliative care clinicians' play in providing generalist palliative care for people with mesothelioma and their carers.

In plain English

This was a review of earlier research. The authors searched four databases for articles from January 2000 to May 2020 on the palliative care needs and experiences of people with mesothelioma and their family carers. Of 508 articles found, 14 were included (8 quantitative, 5 qualitative, 1 review). Most came from the UK and Australia, and most were about malignant pleural mesothelioma. The authors found an overall theme of uncertainty and five themes: co-ordination of services, communication and information, symptom burden, the impact of seeking compensation, and family carer needs. In one included trial, routine early referral to specialist palliative care made no statistically significant difference to quality of life or mood at 12 and 24 weeks for patients with good performance status compared with standard care alone, but it significantly improved carer satisfaction. In one Australian survey that recruited partly through a compensation scheme, 97% of patients sought compensation. Several studies described the claims process as an added burden. The authors concluded that the evidence base needs strengthening and that the role of non-specialist clinicians in palliative care needs more study.

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: Integrative systematic review with narrative synthesis (a review of published studies, not new patient data)
• Who was studied: Published articles found in MEDLINE, CINAHL, PsycINFO and the Cochrane Library, published between 1 January 2000 and 10 May 2020, about people with mesothelioma and their family carers
• Exposure: Not an asbestos exposure study. The topic was the palliative care needs and experiences of people with mesothelioma (mostly malignant pleural mesothelioma) and their family carers.
• Main results:
  • 508 articles were retrieved and 14 met the inclusion criteria
  • The included articles were 8 quantitative studies, 5 qualitative studies and 1 review
  • Most included studies were from the UK (6) or Australia (5)
  • The authors identified a cross-cutting theme of uncertainty covering five themes: organisation and co-ordination of services, communication and information needs, management of care needs and high symptom burden, the impact of seeking compensation, and family carer needs
  • In the one included randomised controlled trial (Brims et al.), routine early referral to specialist palliative care did not result in a statistically significant difference in quality of life or mood at 12 and 24 weeks for patients with good performance status, compared with standard care alone
  • In the same trial, routine early referral to specialist palliative care significantly improved carer satisfaction compared with usual care
  • In an Australian survey (Warby et al.), none of the patients who had not received palliative care felt it could have helped them, whereas 13% of carers thought it would have been helpful
  • In the same survey, 35% of patients wanted more information about what to expect from their disease, and 58% of carers wanted more information about what to expect in caring
  • In the Australian survey (Warby et al.), which included a compensation scheme as a source of recruitment, 97% of patients sought compensation for their malignant pleural mesothelioma
  • Several qualitative studies described seeking compensation as an additional burden on an already difficult situation
  • In an Italian study of patients admitted to home palliative care (Mercadante et al.), three quarters of patients had pain on admission (18 moderate, 2 severe) despite having received high doses of opioids
• The authors' conclusion: The authors concluded that the evidence on the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. They also concluded that more understanding is needed of the role non-specialist clinicians play in providing generalist palliative care.
• Limitations the authors state:
  • The authors may have overlooked relevant studies
  • Many included articles focused on the experience of mesothelioma broadly rather than on palliative care, which limited the depth of the findings
  • The included studies were heterogeneous, using different methods of varying quality
  • Some descriptive studies recruited through compensation claims or lawsuits, so their samples may not represent the target population
  • Response rates in the descriptive studies were relatively low, increasing the chance of non-response bias

Topics

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

Medical terms in this study, explained in our Lexicon: Palliative Care, Mesothelioma, Systematic Review.

Related studies

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• Living with mesothelioma: a systematic review of mental health and well-being impacts and interventions for patients and their informal carers — V. Sherborne, S. Ejegi-Memeh, et al. (2024)
• Current Asbestos Exposure and Future Need for Palliative Care in India — A.V. Jadhav, N.C. Gawde (2019)
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