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

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  • Rosalind Adam
  • Revathi Nair
  • Lisa F Duncan
  • Esyn Yeoh
  • Joanne Chan
  • Vaselisa Vilenskaya
  • Katie I Gallacher

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.

Suggested Citation

  • Rosalind Adam & Revathi Nair & Lisa F Duncan & Esyn Yeoh & Joanne Chan & Vaselisa Vilenskaya & Katie I Gallacher, 2023. "Treatment burden in individuals living with and beyond cancer: A systematic review of qualitative literature," PLOS ONE, Public Library of Science, vol. 18(5), pages 1-20, May.
    • Handle: RePEc:plo:pone00:0286308
    DOI: 10.1371/journal.pone.0286308
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    References listed on IDEAS

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    2. Aileen Timmons & Rachael Gooberman-Hill & Linda Sharp, 2013. ""It's at a Time in Your Life When You Are Most Vulnerable": A Qualitative Exploration of the Financial Impact of a Cancer Diagnosis and Implications for Financial Protection in Health," PLOS ONE, Public Library of Science, vol. 8(11), pages 1-1, November.
    3. Jenny Jakobsson & Ewa Idvall & Christine Kumlien, 2017. "The lived experience of recovery during the first 6 months after colorectal cancer surgery," Journal of Clinical Nursing, John Wiley & Sons, vol. 26(23-24), pages 4498-4505, December.
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