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Patient and carer experiences of nutrition in cancer care: a mixed-methods study

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Abstract

Purpose

Evidence-based guidelines exist to guide health professionals and services about cancer nutrition care; however, the views of cancer patients and carers are not well understood. This study aimed to understand the experience and needs of cancer patients and carers regarding nutrition care across the care continuum.

Methods

Using a mixed-methods approach, cancer patients and carers completed a cross-sectional online survey and focus groups. Participants were recruited through health services and cancer organisation consumer networks via email distribution lists, e-newsletters, and social media. Focus groups were audio-recorded, transcribed, and analysed using content analysis.

Results

Of 165 survey respondents, only 51% (n=84) reported they talked to a health professional about their nutrition care at any time-point, and only 32% with a dietitian. The majority (84%) of patients and carers felt nutrition was important at one or more time-points in their cancer path, indicating during and after cancer treatment the most important. However, perceived support from health professionals for nutrition care was deemed low at all time-points. Five focus groups were held (n=20; 16 patients, 2 carers, 2 both patients/carers) and five themes emerged: nutrition information, experiences and need; control over diet and nutrition; importance and value of nutrition; access to support; what optimal nutrition care looks like.

Conclusion

Patients and carers felt nutrition was important during their cancer path, but perceived support from health professionals for nutrition care was low. This study has highlighted patient and carer nutrition experiences that will inform development of a co-designed optimal cancer nutrition care pathway.

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The authors have full control of the data and agree to allow the journal to review the data if requested.

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Acknowledgements

The authors would like to thank all participants who completed the survey and participated in focus groups, the project steering committee members, Victorian Cancer Malnutrition Collaborative (VCMC) project team, Sarah-May Blaschke for support with the focus group analysis, Victorian health services and cancer organisations who assisted in recruitment, and the Nutrition & Speech Pathology Department at Peter MacCallum Cancer Centre.

Funding

This work was supported by a grant received by the project team from the Victorian Government.

Author information

Authors and Affiliations

  1. Nutrition & Speech Pathology Department, Peter MacCallum Cancer Centre, 305 Grattan Street, Melbourne, VIC, 3000, Australia

    Jenelle Loeliger, Sarah Dewar & Jane Stewart

  2. Allied Health Research, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    Jenelle Loeliger, Sarah Dewar, Nicole Kiss & Jane Stewart

  3. Institute of Physical Activity and Nutrition, Deakin University, Geelong, VIC, Australia

    Nicole Kiss

  4. Cancer Experiences Research, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    Allison Drosdowsky

Authors
  1. Jenelle Loeliger
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  2. Sarah Dewar
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  3. Nicole Kiss
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  4. Allison Drosdowsky
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  5. Jane Stewart
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Contributions

Study conception and design: Jenelle Loeliger, Sarah Dewar, Nicole Kiss, Jane Stewart. Data collection and analysis: Jenelle Loeliger, Sarah Dewar and Alison Drosdowsky. The first draft of the manuscript was written by Jenelle Loeliger, and all authors reviewed and edited previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Jenelle Loeliger.

Ethics declarations

Competing interests

Financial interests: authors JL and SD received a salary from the grant received by the Victorian Government. NK, AD, and JS have no financial conflicts of interest to declare.

Non-financial interests: JL, SD, AD, and JS have no non-financial conflicts of interest to declare. NK reports non-financial support from Impedimed Pty Ltd and Nestle Health Science.

Ethics approval

Ethical approval was received from the Peter MacCallum Cancer Centre Human Research Ethics Committee (LNR/48042/PMCC-2018).

Consent to participate

Informed consent was obtained through a participant information sheet prior to commencing the survey (in the Research Electronic Data Capture) and in written form prior to participating in the focus groups.

Consent for publication

Consent for data collected to be published was obtained through a participant information sheet prior to commencing the survey (in the Research Electronic Data Capture) and in written form prior to participating in the focus groups.

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Loeliger, J., Dewar, S., Kiss, N. et al. Patient and carer experiences of nutrition in cancer care: a mixed-methods study. Support Care Cancer 29, 5475–5485 (2021). https://doi.org/10.1007/s00520-021-06111-1

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