A visual approach to providing prognostic information to parents of children with retinoblastoma

Authors

  • Rachel L. Panton,

    1. Departments of Ophthalmology and Pediatrics, Hospital for Sick Children, University of Toronto, Toronto, Ont., Canada
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    • R. L. P. and R. D. contributed equally to this research project.

  • Robert Downie,

    1. Department of Sociology, University of Western Ontario, London, Ont., Canada
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    • R. L. P. and R. D. contributed equally to this research project.

  • Tran Truong,

    1. Health Information Research, Princess Margaret Hospital, University Health Network, University of Toronto, Toronto, Ont., Canada
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  • Leslie MacKeen,

    1. Departments of Ophthalmology and Pediatrics, Hospital for Sick Children, University of Toronto, Toronto, Ont., Canada
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  • Stefane Kabene,

    1. Administrative and Commercial Studies, University of Western Ontario, London, Ont., Canada
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  • Qi-Long Yi,

    1. Health Informatics Research and Biostatistics, Princess Margaret Hospital, University Health Network, University of Toronto, Toronto, Ont., Canada
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  • Helen S. L. Chan,

    1. Division of Hematology–Oncology, Hospital for Sick Children, University of Toronto, Toronto, Ont., Canada
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  • Brenda L. Gallie

    Corresponding author
    1. Departments of Ophthalmology and Pediatrics, Hospital for Sick Children, University of Toronto, Toronto, Ont., Canada
    2. Health Information Research, Princess Margaret Hospital, University Health Network, University of Toronto, Toronto, Ont., Canada
    • Ontario Cancer Institute, Princess Margaret Hospital, University Health Network, RM 8-415, 610 University Avenue, Toronto, Ont., Canada M5G 2M9
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Abstract

Objective: Parents must rapidly assimilate complex information when a child is diagnosed with cancer. Education correlates with the ability to process and use medical information. Graphic tools aid reasoning and communicate complex ideas with precision and efficiency.

Methods: We developed a graphic tool, DePICT (Disease-specific electronic Patient Illustrated Clinical Timeline), to visually display entire retinoblastoma treatment courses from real-time clinical data. We report retrospective evaluation of the effectiveness of DePICT to communicate risk and complexity of treatment to parents. We assembled DePICT graphics from multiple children on cards representing each stage of intraocular retinoblastoma. Forty-four parents completed a 14-item questionnaire to evaluate the understanding of retinoblastoma treatment and outcomes acquired from DePICT.

Results: As a proposed tool for informed consent, DePICT effectively communicated knowledge of complex medical treatment and risks, regardless of the education level. We identified multiple potential factors affecting parent comprehension of treatment complexity and risk. These include language proficiency (p=0.005) and age-related experience, as younger parents had higher education (p=0.021) but lower comprehension scores (p=0.011), regardless of first language.

Conclusion: Provision of information at diagnosis concerning long-term treatment complexity helps parents of children with cancer. DePICT effectively transfers knowledge of treatments, risks, and prognosis in a manner that offsets parental educational disadvantages. Copyright © 2008 John Wiley & Sons, Ltd.

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