Abstract:
Background: Parents and survivors of retinoblastoma often hold misconceptions
about the disease and desire more extensive and detailed information about its ge
netic nature. The aim of this study was to co- develop and evaluate a genetic education
booklet for retinoblastoma.
Methods: A human- centered design approach was employed, in which the study team
consulted with clinician and patient knowledge user groups to design, produce, and
refine an educational booklet. Over three phases of consultation, the study team met
with each knowledge user group to review booklet prototypes and collect feedback
for its further refinement. A preliminary evaluation using quantitative and qualitative
methods was completed with six mothers of children with retinoblastoma.
Results: The iterative, phased design process produced an educational booklet rich
in images and stories, with complex genetic topics described in simplified terms. The
preliminary evaluation showed an average improvement in knowledge between pre-
and post- test questionnaire of 10%. Participants were satisfied with content and com
prehensiveness of the information included in the booklet.
Conclusion: A novel educational tool for families affected by retinoblastoma was
developed through collaboration with health care and patient knowledge users.
Preliminary evaluation results indicate it is feasible to implement and study the book
let in a prospective, pragmatic trial to evaluate its efficacy.
