Caregivers of patients with malignant pleural mesothelioma: who provides care, what care do they provide and what burden do they experience?

Our plain-English summary of Caregivers of patients with malignant pleural mesothelioma: who provides care, what care do they provide and what burden do they experience?, by A. Moore, B. Bennett, G. Taylor-Stokes, et al (Quality of Life Research, 2023).

The study

• Authors: A. Moore, B. Bennett, G. Taylor-Stokes, M.J. Daumont
• Journal: Quality of Life Research
• Published: 2023;32(9):2587-2599
• Cited by: 7 articles, as counted by NIH iCite
• Read it: PubMed · Publisher · Free full text

Abstract

Purpose: There are limited data on the impact of caregiving for patients with malignant pleural mesothelioma (MPM) on the caregiver. We aimed to identify the demographic characteristics of these caregivers, the caregiving activities they perform and how caregiving burden impacts their work productivity and overall activity.

Methods: This cross-sectional study collected data from caregivers of patients with MPM across France, Italy, Spain and the United Kingdom January-June 2019. Caregiver demographics, daily caregiving tasks and the impact of caregiving on physical health was collected via questionnaire. The Zarit Burden Interview (ZBI) was used to assess caregiver burden and the Work Productivity and Activity Impairment questionnaire (WPAI) assessed impairment at work and during daily activities. Analyses were descriptive.

Results: Overall, 291 caregivers provided data. Caregivers were mostly female (83%), living with the patient (82%) and their partner/spouse (71%). Caregivers provided over five hours of daily emotional/physical support to patients. ZBI scores indicated 74% of caregivers were at risk of developing depression. Employed caregivers had missed 12% of work in the past seven days, with considerable presenteeism (25%) and overall work impairment (33%) observed. Overall, the mean activity impairment was 40%.

Conclusion: Caregivers provide essential care for those with MPM. We show caregiving for patients with MPM involves a range of burdensome tasks that impact caregivers' emotional health and work reflected in ZBI and WPAI scores. Innovations in the management of MPM must account for how caregivers may be impacted and can be supported to carry out this important role.

© 2023. The Author(s).

In plain English

This cross-sectional survey described unpaid primary caregivers of patients with unresectable malignant pleural mesothelioma (MPM). Between January and June 2019, 291 caregivers in France, Italy, Spain and the UK completed questionnaires on caregiving tasks, burden and work. Their mean age was 59 years. Of the caregivers, 83% were female, 82% lived with the patient and 71% were the patient's spouse or partner. They spent an average of 5.8 hours a day on emotional or physical support. The mean Zarit Burden Interview score was 34.5, and 74% scored 24 or more, a threshold used to indicate risk of depression. Three quarters (75%) said caregiving had affected their health. Employed caregivers missed about 12% of work time in the past seven days, with 33% overall work impairment. Mean activity impairment across caregivers was 40%. Burden looked higher for caregivers of patients with poorer performance status or the sarcomatoid subtype, but no statistical comparisons were made. The authors concluded that caring for patients with MPM involves burdensome activities affecting caregivers' emotional and physical health. They noted possible selection bias and reliance on caregivers' recall.

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: Cross-sectional questionnaire survey, drawn from a larger multinational survey; descriptive analyses only, with no statistical comparisons
• Who was studied: 291 adult primary caregivers of patients with MPM: France (90), Italy (70), Spain (111) and the UK (20), surveyed January to June 2019
• Exposure: Providing informal (unpaid) care to a patient with unresectable malignant pleural mesothelioma. Asbestos exposure was not studied.
• Main results:
  • Among all 291 caregivers: mean age 59 years, 83% female, 82% living with the patient, 71% the patient's spouse or partner
  • Caregivers spent an average of 5.8 (SD 6.3) hours a day providing emotional or physical support
  • About one in three caregivers in France and Italy, versus two in three in Spain and the UK, named providing emotional support as one of their top three most troublesome tasks
  • Mean Zarit Burden Interview total score was 34.5 (SD 15.3). 74% of caregivers scored 24 or more, which the authors took to indicate high risk of depression.
  • 75% of caregivers reported that caregiving had impacted their health. 63% were taking medication for a condition they believed caregiving had caused or worsened.
  • Over the past seven days, caregivers reported about 12% of work time missed, impairment while working 25% of the time, and 33% overall work impairment. Only employed caregivers (n = 106) were eligible for these work items.
  • Mean activity impairment among all caregivers was 40%
  • Burden appeared higher among caregivers of patients with worse performance score or with sarcomatoid MPM. These were descriptive differences only.
• The authors' conclusion: The authors concluded that caring for patients with MPM involves a range of burdensome activities that affect caregivers' emotional and physical health and their ability to carry out daily activities
• Limitations the authors state:
  • The study was a snapshot at one point in time, so caregivers' status before they began caregiving is unknown
  • The study relied on the accuracy of caregivers' recall
  • Inclusion depended on willingness to participate, which carries a risk of selection bias
  • The analyses were purely descriptive, so differences observed may not be statistically meaningful

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.

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• Managing malignant pleural mesothelioma: experience and perceptions of health care professionals caring for people with mesothelioma — A. Warby, H.M. Dhillon, et al. (2019)
• Psychological Distress after a Diagnosis of Malignant Mesothelioma in a Group of Patients and Caregivers at the National Priority Contaminated Site of Casale Monferrato — M. Bonafede, A. Granieri, et al. (2020)
• Understanding the Experiences of end of Life Care for Patients with Mesothelioma from the Perspective of Bereaved Family Caregivers in the UK: A Qualitative Analysis — M. Harrison, L. Darlison, et al. (2022)
• What are the psychological effects of mesothelioma on patients and their carers? A scoping review — V. Sherborne, J. Seymour, et al. (2020)

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