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Developing an Education Pathway for Breast Cancer Patients Receiving Rapid Diagnostic Testing: Investigating Informational and Supportive Care Needs

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Abstract

Several studies have examined the informational needs of patients undergoing the breast diagnostic process where needs are highest during testing and prior to receiving a diagnosis. To aid in the development of an education pathway, we identified patient information needs. A multi-method approach to identify areas of need and to understand when and how information should be provided to patients was undertaken. The methods included an environmental scan of consumer health information, ethnographic observation of the patient clinical experience, key informant interviews, and a needs assessment survey. The data collected from the environmental scan, ethnography, and interviews were used to develop the items in the survey. The survey was developed around four domains: (1) Medical Procedures and Tests, (2) Understanding the Rapid Diagnostic Process, (3) Breast Cancer and Other Breast Conditions, and (4) Support and Coping. A total of 101 patients completed the survey. Mean importance scores were significantly different between domains of information need (p < .0001) and significantly higher for the ‘Medical Procedures and Tests’ domain compared with all others. Multivariate analysis suggested that participants with higher levels of education (p = .02) and a preference to speak English at home (p = .009) tended to rate the importance of ‘Support and Coping’ information lower than other participants. Information about medical procedures and tests are most important for the patients undergoing rapid diagnostic testing in our sample. Education materials that are tailored to patient needs should be provided to patients during this stage of the cancer journey to help meet informational needs.

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Funding

Funding for the research project and the subsequent development of the comprehensive education pathway was provided by the Princess Margaret Cancer Centre Foundation.

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Authors and Affiliations

  1. Cancer Education Program, Princess Margaret Cancer Centre, Toronto, Ontario, Canada

    Janette Brual, Nazek Abdelmutti, Arnav Agarwal, Angela Arisz, Meredith Giuliani & Janet Papadakos

  2. School of Medicine, University of Toronto, Toronto, Ontario, Canada

    Arnav Agarwal

  3. Internal Medicine Residency Program, University of Ottawa, Ottawa, Ontario, Canada

    Angela Arisz

  4. After Cancer Treatment Transition Clinic, Women’s College Hospital, Toronto, Ontario, Canada

    Aronela Benea & Bridgette Lord

  5. Gattuso Rapid Diagnostic Program, Princess Margaret Cancer Centre, Toronto, Ontario, Canada

    Bridgette Lord & Terri Stuart-McEwan

  6. Biostatistics Department, Princess Margaret Cancer Centre, Toronto, Ontario, Canada

    Christine Massey

  7. Radiation Oncology Program, Princess Margaret Cancer Centre, Toronto, Ontario, Canada

    Meredith Giuliani

  8. Patient Education, Ontario Health (Cancer Care Ontario), Toronto, Ontario, Canada

    Janet Papadakos

  9. Institute of Health Policy, Management & Evaluation, University of Toronto, Toronto, Ontario, Canada

    Janet Papadakos

Authors
  1. Janette Brual
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  2. Nazek Abdelmutti
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  3. Arnav Agarwal
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  4. Angela Arisz
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  5. Aronela Benea
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  6. Bridgette Lord
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  7. Christine Massey
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  8. Meredith Giuliani
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  9. Terri Stuart-McEwan
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  10. Janet Papadakos
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Correspondence to Janet Papadakos.

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Brual, J., Abdelmutti, N., Agarwal, A. et al. Developing an Education Pathway for Breast Cancer Patients Receiving Rapid Diagnostic Testing: Investigating Informational and Supportive Care Needs. J Canc Educ 37, 568–577 (2022). https://doi.org/10.1007/s13187-020-01847-6

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  • DOI: https://doi.org/10.1007/s13187-020-01847-6

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