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

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Abstract

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.

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Availability of data and materials

Participant data are not available for distribution due to confidentiality. Interview discussion guide and coding inquiries can be directed to adam.gibson@phmr.com.

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Acknowledgements

The authors would like to thank the patients and caregivers who participated for their valuable contributions and without whom this research would not have been possible.

Funding

This study was funded by Bristol-Myers Squibb.

Author information

Authors and Affiliations

  1. Putnam Associates, 22-24 Torrington Place, Fitzrovia, London, WC1E 7HJ, UK

    Adam E. J. Gibson, Waqas Ahmed & Louise Longworth

  2. Bristol Myers Squibb (formerly), Sanderson Rd, Denham, Uxbridge, UB8 1DH, UK

    Bryan Bennett

  3. Bristol Myers Squibb (formerly), Avenue de Finlande 8, Building F – 1st Floor, 1420, Braine-l’Alleud, Belgium

    Melinda Daumont

  4. Mesothelioma UK, 235 Loughborough Road, Mountsorrel, Loughborough, Leicestershire, LE12 7AS, UK

    Liz Darlison

Authors
  1. Adam E. J. Gibson
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  2. Waqas Ahmed
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  3. Louise Longworth
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  4. Bryan Bennett
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  5. Melinda Daumont
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  6. Liz Darlison
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Contributions

AG contributed to the conception and design, data acquisition, data analysis, and data interpretation. WA contributed to data analysis and data interpretation. LL, BB, MD, and LD contributed to the conception and design, as well as data interpretation. All authors reviewed the manuscript.

Corresponding author

Correspondence to Adam E. J. Gibson.

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Conflict of interest

The authors declare no competing interests.

Ethical approval

The study design and conduct were reviewed and received ethical approval prior to commencement by an independent ethical review board, WIRB (WCG IRB, www.wcgirb.com). All interviewees provided recorded consent to participate and for use of their data in this research and publication.

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Gibson, A.E.J., Ahmed, W., Longworth, L. et al. Development of Patient and Caregiver Conceptual Models Investigating the Health-Related Quality of Life Impacts of Malignant Pleural Mesothelioma. Patient (2024). https://doi.org/10.1007/s40271-024-00690-x

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