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

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

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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.


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.
Original languageEnglish
Article numbere0286308
JournalPloS ONE
Issue number5
Publication statusPublished - 25 May 2023

Bibliographical note

The authors would like to thank Melanie Bickerton, Information Consultant for Medicine and Biomedical Sciences for her assistance with database search strategies.

Funding: This research was funded by the Chief Scientist Office ( Scottish Clinical Academic Fellowship (Grant CSO-SCAF/18/02). This grant was awarded to RA. The funder had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Data Availability Statement

Review of published literature - all original articles are available online.


  • Male
  • Humans
  • Social Support
  • Neoplasms/therapy
  • Self-Management


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