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. 2023 May 25;18(5):e0286308.
doi: 10.1371/journal.pone.0286308. eCollection 2023.

Treatment burden in individuals living with and beyond cancer: A systematic review of qualitative literature

Rosalind Adam  1 , Revathi Nair  2 , Lisa F Duncan  1 , Esyn Yeoh  2 , Joanne Chan  2 , Vaselisa Vilenskaya  2 , Katie I Gallacher  3
Affiliations

Treatment burden in individuals living with and beyond cancer: A systematic review of qualitative literature

Rosalind Adam et al. PLoS One. .

Abstract

Background: Individuals with cancer are being given increasing responsibility for the self-management of their health and illness. In other chronic diseases, individuals who experience treatment burden are at risk of poorer health outcomes. Less is known about treatment burden and its impact on individuals with cancer. This systematic review investigated perceptions of treatment burden in individuals living with and beyond cancer.

Methods and findings: Medline, CINAHL and EMBASE databases were searched for qualitative studies that explored treatment burden in individuals with a diagnosis of breast, prostate, colorectal, or lung cancer at any stage of their diagnostic/treatment trajectory. Descriptive and thematic analyses were conducted. Study quality was assessed using a modified CASP checklist. The review protocol was registered on PROSPERO (CRD42021145601). Forty-eight studies were included. Health management after cancer involved cognitive, practical, and relational work for patients. Individuals were motivated to perform health management work to improve life-expectancy, manage symptoms, and regain a sense of normality. Performing health care work could be empowering and gave individuals a sense of control. Treatment burden occurred when there was a mismatch between the resources needed for health management and their availability. Individuals with chronic and severe symptoms, financial challenges, language barriers, and limited social support are particularly at risk of treatment burden. For those with advanced cancer, consumption of time and energy by health care work is a significant burden.

Conclusion: Treatment burden could be an important mediator of inequities in cancer outcomes. Many of the factors leading to treatment burden in individuals with cancer are potentially modifiable. Clinicians should consider carefully what they are asking or expecting patients to do, and the resources required, including how much patient time will be consumed.

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Conflict of interest statement

The authors have declared that no competing interests exist.

Figures

Fig 1
Fig 1. PRISMA flow diagram of study inclusion process.
Fig 2
Fig 2. Analytical themes and relationships between them.
See this image and copyright information in PMC

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References

    1. Dobler CC, Harb N, Maguire CA, Armour CL, Coleman C, Murad MH. Treatment burden should be included in clinical practice guidelines. BMJ [Internet]. 2018. Oct 12 [cited 2023 Apr 18];363. Available from: https://www.bmj.com/content/363/bmj.k4065 doi: 10.1136/bmj.k4065 - DOI - PubMed
    1. Mair FS, Montori VM, May CR. Digital transformation could increase the burden of treatment on patients. BMJ [Internet]. 2021. Nov 25 [cited 2023 Apr 18];375. Available from: https://www.bmj.com/content/375/bmj.n2909 doi: 10.1136/bmj.n2909 - DOI - PubMed
    1. Mair FS, May CR. Thinking about the burden of treatment. BMJ [Internet]. 2014. Nov 10 [cited 2022 Jun 9];349:g6680. Available from: https://www.bmj.com/content/349/bmj.g6680 doi: 10.1136/bmj.g6680 - DOI - PubMed
    1. May CR, Eton DT, Boehmer K, Gallacher K, Hunt K, MacDonald S, et al.. Rethinking the patient: Using Burden of Treatment Theory to understand the changing dynamics of illness. BMC Health Serv Res [Internet]. 2014. Jun 26 [cited 2022 Jun 9];14(1):1–11. Available from: https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-14... - DOI - PMC - PubMed
    1. Gallacher K, May CR, Montori VM, Mair FS. Understanding Patients’ Experiences of Treatment Burden in Chronic Heart Failure Using Normalization Process Theory. Ann Fam Med [Internet]. 2011. [cited 2022 Jun 9];9(3):235. Available from: /pmc/articles/PMC3090432/ doi: 10.1370/afm.1249 - DOI - PMC - PubMed

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