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. 2023 Sep;32(9):2587-2599.
doi: 10.1007/s11136-023-03410-4. Epub 2023 Apr 25.

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

Adam Moore  1 , Bryan Bennett  2 , Gavin Taylor-Stokes  3 , Melinda J Daumont  4
Affiliations

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

Adam Moore et al. Qual Life Res. 2023 Sep.

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.

Keywords: Caregiver burden; Malignant; Mesothelioma; Patient care; Quality of life.

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Conflict of interest statement

MD and BB are employees of Bristol Myers Squibb. GT and AM are employees of Adelphi Real World and were paid consultants to Bristol Myers Squibb in connection with the development of this manuscript.

Figures

Fig. 1
Fig. 1
Top five caregiving activities undertaken daily by caregivers of patients with MPM (% of caregivers completing each task daily). Data are stratified by country, patient current line of treatment, caregiver age, ECOG score and MPM subtype. Best supportive care, BSC; caregiver self-completion form received, CSC; Eastern cooperative oncology group, ECOG—higher scores indicate lower performance status; first-line,1L; maintenance, maint; malignant pleural mesothelioma, MPM; systemic anti-cancer therapy, SACT; second-line, 2L; United Kingdom, UK
Fig. 2
Fig. 2
Top five most troublesome caregiving activities undertaken daily by caregivers of patients with MPM (% of caregivers selecting each task within their top three most troublesome tasks). Data are stratified by country, patient current line of treatment, caregiver age, ECOG score and MPM subtype. Best supportive care, BSC; caregiver self-completion form received, CSC; Eastern cooperative oncology group, ECOG—higher scores indicate lower performance status; first-line,1L; maintenance, maint; malignant pleural mesothelioma, MPM; systemic anti-cancer therapy, SACT; second-line, 2L; United Kingdom, UK
Fig. 3
Fig. 3
Mean ZBI-total stratified by country, age, patients’ current treatment, current line of treatment, disease subtype and ECOG performance score. Error bars represent 95% confidence intervals. Best supportive care, BSC; caregiver self-completion form received, CSC; Eastern cooperative oncology group, ECOG—higher scores indicate lower performance status; first-line,1L; maintenance, maint; malignant pleural mesothelioma, MPM; systemic anti-cancer therapy, SACT; second-line, 2L; United Kingdom, UK; Zarit burden interview scale, ZBI
Fig. 4
Fig. 4
Caregivers (n = 291) self-reported impact of caregiving on health
Fig. 5
Fig. 5
Mean overall activity impairment (WPAI) in caregivers of patients with MPM, stratified by country, age, patients’ current line of treatment, disease subtype and ECOG performance score. Error bars represent 95% confidence intervals. Best supportive care, BSC; caregiver self-completion form received, CSC; Eastern cooperative oncology group, ECOG—higher scores indicate lower performance status; first-line,1L; maintenance, maint; malignant pleural mesothelioma, MPM; systemic anti-cancer therapy, SACT; second-line, 2L; United Kingdom, UK; work productivity and activity impairment questionnaire, WPAI
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