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Mapping Information Needs over the Diagnosis, Treatment, and Survivorship Trajectory for Esophago-gastric Cancer Patients and Their Main Supporters: a Retrospective Survey

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Abstract

This study reports preliminary data about the information needs of esophago-gastric cancer survivors and their supporters across diagnosis and treatment by identifying time-specific needs and whether the information provided aligned with the needs at each time point. Survivors (n = 26) and supporters (n = 15) were recruited from a public teaching hospital in South Australia. Both groups provided recall data describing personal information domain challenges at 6 clinically significant time points ranging from diagnosis to > 2 years post diagnosis. Responses were analyzed using descriptive statistics for non-normally distributed data. Needs relating to communication, tests, disease, and the physical effects information domains were consistently high across time and in groups. Supporters’ overall needs were greater than those of survivors, particularly at times of high need. At times of low need, both groups reported information overload. Our results confirm that survivors and supporters require information throughout the cancer trajectory, up to 2 years after diagnosis, and supporters’ needs are likely to be even greater. Results highlight the importance of timely and relevant information provision and provide a basis for the development of resources to empower survivors and supporters to identify and articulate their personal information needs. Patient navigators may provide an avenue to facilitate this approach.

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Acknowledgements

We sincerely thank all participants for their support and taking the time to complete the surveys.

Funding

This work was supported by the Cancer Council South Australia’s Beat Cancer Project on behalf of its donors and the State Government of South Australia through the Department of Health together with the support of the Flinders Medical Centre Foundation, its donors and partners.

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Authors and Affiliations

  1. Flinders Centre for Innovation in Cancer, College of Medicine and Public Health, Flinders University, Bedford Park, South Australia, Australia

    Ingrid H. Flight, Janine Chapman, Nathan J. Harrison & Carlene J. Wilson

  2. National Centre for Education and Training on Addiction (NCETA), Flinders University, Bedford Park, South Australia, Australia

    Janine Chapman & Nathan J. Harrison

  3. Department of Digestive Surgery, Flinders Medical Centre, Bedford Park, South Australia, Australia

    Jeff Bull

  4. College of Medicine and Public Health, Flinders University Discipline of Surgery, Bedford Park, South Australia, Australia

    Jeff Bull

  5. Cancer Voices South Australia, Kensington Park, South Australia, Australia

    Christine Christensen

  6. Department of Medical Oncology, Flinders Centre for Innovation in Cancer, Flinders Medical Centre and Flinders University, Bedford Park, South Australia, Australia

    Bogda Koczwara

  7. Olivia Newton-John Cancer Wellness Research Centre, Austin Health, Heidelberg, Victoria, Australia

    Carlene J. Wilson

  8. School of Psychology and Public Health, La Trobe University, Bundoora, Victoria, Australia

    Carlene J. Wilson

Authors
  1. Ingrid H. Flight
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  2. Janine Chapman
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  3. Nathan J. Harrison
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  4. Jeff Bull
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  5. Christine Christensen
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  6. Bogda Koczwara
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  7. Carlene J. Wilson
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Contributions

(Following CRediT Taxonomy) Conceptualization: Ingrid Flight, Janine Chapman, Carlene Wilson. Methodology: Ingrid Flight, Janine Chapman, Chris Christensen, Bogda Koczwara, Carlene Wilson. Formal analysis and investigation: Ingrid Flight, Janine Chapman, Nathan Harrison. Writing, original draft: Ingrid Flight, Nathan Harrison. Writing, review and editing: Ingrid Flight, Janine Chapman, Nathan Harrison, Jeff Bull, Chris Christensen, Bogda Koczwara, Carlene Wilson. Project administration: Ingrid Flight. Funding acquisition: Ingrid Flight. Resources: Nathan Harrison, Jeff Bull, Chris Christensen. Data curation: Nathan Harrison, Jeff Bull. Final approval of submitted version: Janine Chapman, Nathan Harrison, Jeff Bull, Chris Christensen, Bogda Koczwara, Carlene Wilson. Supervision: Carlene Wilson.

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Correspondence to Carlene J. Wilson.

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Flight, I.H., Chapman, J., Harrison, N.J. et al. Mapping Information Needs over the Diagnosis, Treatment, and Survivorship Trajectory for Esophago-gastric Cancer Patients and Their Main Supporters: a Retrospective Survey. J Canc Educ 37, 655–661 (2022). https://doi.org/10.1007/s13187-020-01862-7

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