Development of Patient and Caregiver Conceptual Models Investigating the Health-Related Quality of Life Impacts of Malignant Pleural Mesothelioma.

Publisher: Adis, Springer International Country of Publication: New Zealand NLM ID: 101309314 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1178-1661 (Electronic) Linking ISSN: 11781653 NLM ISO Abbreviation: Patient Subsets: MEDLINE

Publication: Auckland : Adis, Springer International
Original Publication: Chester, UK : Wolters Kluwer Health/Adis

Quality of Life* ; Caregivers*/psychology ; Mesothelioma, Malignant*/psychology; Humans ; Male ; Female ; Middle Aged ; Aged ; United Kingdom ; Qualitative Research ; Australia ; Pleural Neoplasms/psychology ; Interviews as Topic ; Adult ; Aged, 80 and over ; Lung Neoplasms/psychology

Background: Malignant pleural mesothelioma (MPM) is a rare and usually fatal malignancy frequently linked to occupational asbestos exposures and associated with poor prognosis and considerable humanistic burden. The study aimed to develop conceptual models of the health-related quality of life (HRQoL) impact on patients with and receiving treatment for MPM, and the burden on their caregivers.
Methods: This multi-country study (Australia and United Kingdom) adopted a qualitative methodology to conduct semi-structured, independent interviews with people with MPM (n = 26), current caregivers (n = 20), and caregivers of people who had recently died because of MPM (n = 4). Participants were recruited using a purposive sampling approach and interviews conducted via telephone between January 2021 and January 2022. Transcripts were analysed using thematic analysis and used to construct conceptual models.
Results: Patient analysis yielded four overarching themes: (1) debilitating burden of breathlessness and fatigue; (2) physical mesothelioma symptoms experienced by patients; (3) distress of MPM on the self and family; and (4) treatment is worth 'having a go' despite the potential impact on symptoms. Caregiver analysis yielded five core themes: (1) daily life limited by caregiving duties; (2) emotional well-being and the need for support; (3) the relational role shift to caregiver; (4) time spent providing care negatively impacts work and productivity; and (5) positive aspects and outcomes of caregiving.
Conclusions: This study highlights the substantial daily and emotional HRQoL impact that MPM symptoms have on patients and caregivers. Both groups reduced work, productivity, and social and leisure activities. There was evidence of positive HRQoL impacts as a result of immunotherapy and radiotherapy, but less for chemotherapy. Caregiver impacts were intensified during the end-of-life period and persisted following patient death. Evident is a need for increased psychological support, information, and advice for caregivers, increased during the end-of-life period.
(© 2024. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

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Date Created: 20240415 Date Completed: 20240823 Latest Revision: 20240827

20240828

10.1007/s40271-024-00690-x

38619810