June 2020
Volume 61, Issue 7
ARVO Annual Meeting Abstract  |   June 2020
Development Of A Patient Education Booklet For Families Affected By Retinoblastoma
Author Affiliations & Notes
  • Helen Dimaras
    The Hospital for Sick Children, Toronto, Ontario, Canada
    The University of Toronto, Ontario, Canada
  • Monica Brundage
    The University of Toronto, Ontario, Canada
  • Ashna Hudani
    The University of Toronto, Ontario, Canada
  • Taylor Irvine
    The University of Toronto, Ontario, Canada
  • Lucy Njambi
    The University of Nairobi, Nairobi, Kenya
  • Kahaki Kimani
    The University of Nairobi, Nairobi, Kenya
  • Footnotes
    Commercial Relationships   Helen Dimaras, None; Monica Brundage, None; Ashna Hudani, None; Taylor Irvine, None; Lucy Njambi, None; Kahaki Kimani, None
  • Footnotes
    Support  Queen Elizabeth II Diamond Jubilee Foundation
Investigative Ophthalmology & Visual Science June 2020, Vol.61, 3073. doi:
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      Helen Dimaras, Monica Brundage, Ashna Hudani, Taylor Irvine, Lucy Njambi, Kahaki Kimani; Development Of A Patient Education Booklet For Families Affected By Retinoblastoma. Invest. Ophthalmol. Vis. Sci. 2020;61(7):3073.

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      © ARVO (1962-2015); The Authors (2016-present)

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Purpose : Retinoblastoma is a childhood eye cancer with heritable consequences. Our previous research with Kenyan families affected by retinoblastoma revealed their desire for a tangible educational resource explaining the heritable nature of the disease, preferably in the form of a booklet. The aim of this project therefore, was to develop a patient education booklet through collaboration between doctors, nurses, parents, survivors, and support group leaders.

Methods : A human-centered design approach was employed, in which the study team consulted with clinician and patient stakeholder groups to design, produce and refine an educational booklet. Clinician stakeholders included: doctors and nurses managing retinoblastoma at Kenyatta National Hospital (Nairobi), Moi Teaching and Referral Hospital (Eldoret), and PCEA Kikuyu Eye Hospital (Kikuyu); cancer support group leaders; and child life specialists. Patient stakeholders included: parents of children with retinoblastoma; and survivors of retinoblastoma. Over 3 phases of consultation, the study team met with each stakeholder group to review booklet prototypes and collect feedback for its further refinement.

Results : The iterative, phased design process produced an educational booklet rich in images and stories, with complex genetic topics described in simplified terms. The images depict cartoons of families visiting doctors, and simplified diagrams of cells and genes. The booklet employs characters and stories to explain the nuances of heritable and non-heritable retinoblastoma. A guidebook was also created to direct implementation of the booklet during regular clinic visits, with the intention is to promote dialogue between clinicians and patients that would clarify difficult concepts and eliminate confusion.

Conclusions : A novel educational tool for families affected by retinoblastoma was developed through collaboration with clinician and family stakeholders. Next steps include testing of the booklet in a prospective, pragmatic trial to evaluate its effect on knowledge.

This is a 2020 ARVO Annual Meeting abstract.


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