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Enhancing the provision of cancer nutrition information to support care through experience-based co-design: a mixed-methods study

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Abstract

Purpose

Nutrition is essential within cancer care, yet patient and carer access to nutrition care and information is variable. This study aimed to (1) investigate patient and carer access and perceptions, and health professional views and practices, relating to cancer nutrition information and care; and (2) co-design interactive resources to support optimal nutrition care.

Methods

Patients and carers completed a survey regarding access to nutrition care and information. Seven multidisciplinary health service teams were invited to participate in a survey and focus group to assess barriers and enablers in nutrition practices. Focus groups were recorded, transcribed and thematically analyzed. Eligible patients, carers, and health professionals were invited to four virtual workshops utilizing experience-based co-design methods to identify nutrition priority areas and design resources. Workshop participant acceptability of the resources was measured.

Results

Of 104 consumer survey respondents (n = 97 patients, n = 7 carers), 61% agreed that it “took too much time to find evidence-based nutrition and cancer information”, and 46% had seen a dietitian. Thirty-four of 38 health professionals completed the survey and 30 participated in a focus group, and it was identified the greatest barriers to delivering nutrition care were lack of referral services, knowledge or skill gaps, and time. Twenty participants (n = 10 patients and carers, n = 10 health professionals) attended four workshops and co-designed a suite of 46 novel resources rated as highly acceptable.

Conclusion

Improved communication, training, and availability of suitable resources could improve access to and support cancer nutrition information and care. New, co-designed cancer nutrition resources were created and deemed highly acceptable to patients, carers, and health professionals.

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Data Availability

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

Abbreviations

CanEAT:

The CanEAT pathway

EBCD:

Experienced-based co-design

GP:

General practitioner

HP:

Health professional

MDT:

Multidisciplinary team

REDCap:

Research electronic data capture

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Acknowledgements

The authors would like to thank all participants who completed the surveys, participated in focus groups and/or the co-design workshops. In addition, a special mention for contributions provided by the Victorian Government, project steering committee members, Victorian Cancer Malnutrition Collaborative project team, and the health services who participated as an implementation team (Peter MacCallum Cancer Centre, St Vincent’s Health Melbourne, Goulbourn Valley Health, Eastern Health, Access and Community Health, healthAbility, Deepdene Surgery).

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, Jane Stewart, Vanessa Hughes & Rebecca McIntosh

  2. School of Exercise and Nutrition Sciences, Deakin University, Deakin, VIC, Australia

    Jenelle Loeliger

  3. School of Health Sciences, University of Melbourne, Parkville, VIC, Australia

    Jill Francis

  4. Sir Peter MacCallum Department of Oncology, The University of Melbourne, Victoria, 3010, Australia

    Jill Francis

  5. Department of Health Services Research & Implementation Science, Peter MacCallum Cancer Centre, Melbourne, VIC, Australia

    Jill Francis

  6. Institute for Physical Activity and Nutrition, Deakin University, VIC, Australia

    Nicole Kiss

  7. Consumer Representative, Melbourne, VIC, Australia

    Samantha Chandler & Keith Donohoe

  8. Nutrition & Dietetics, Goulburn Valley Health, Shepparton, VIC, Australia

    Wendy Swan

  9. Nutrition Department, Austin Health, Heidelberg, VIC, Australia

    Kate Kaegi

  10. Nutrition and Dietetics Department, Alfred Health, Melbourne, VIC, Australia

    Andrea Elliott

Authors
  1. Jenelle Loeliger
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  2. Jill Francis
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  3. Nicole Kiss
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  4. Jane Stewart
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  6. Keith Donohoe
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  7. Vanessa Hughes
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  9. Kate Kaegi
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  10. Andrea Elliott
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  11. Rebecca McIntosh
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Contributions

All authors contributed to the study conception and design. Material presentation, data collection and analysis were performed by Jenelle Loeliger and Rebecca McIntosh. The first draft of the manuscript was written by Jenelle Loeliger and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Jenelle Loeliger.

Ethics declarations

Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. Ethical approval was received from the Peter MacCallum Cancer Centre Human Research Ethics Committee (HREC/74010/PMCC-2021).

Consent to participate

Informed consent was obtained through a participant information sheet prior to commencing the surveys (in the Research Electronic Data Capture), in written form prior to participating in the focus groups and obtained in verbal and written form for the co-design workshops.

Consent for publication

Not applicable.

Competing interests

Jenelle Loeliger and Rebecca McIntosh received a salary from the grant received for this work. Nicole Kiss and Jenelle Loeliger are unpaid members of the Clinical Oncology Society of Australia Nutrition Executive Committee. Rebecca McIntosh is an unpaid member of the Clinical Oncology Society of Australia Cancer Survivorship Executive Committee. Nicole Kiss has received research support from each of The Victorian Cancer Agency, Medical Nutrition Industry, World Cancer Research Funds, Medical Research Future Fund, Amgen OA-ANZBMS and Honorarium from Abbott Australasia. Nicole Kiss received a speaking fee from Dietitian Connection. Nicole Kiss is an unpaid member of the Nursing and Allied Health Committee, International Association for the Study of Lung Cancer. All other authors declare that they have no conflicts of interest.

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Loeliger, J., Francis, J., Kiss, N. et al. Enhancing the provision of cancer nutrition information to support care through experience-based co-design: a mixed-methods study. Support Care Cancer 32, 257 (2024). https://doi.org/10.1007/s00520-024-08453-y

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