Development and preliminary evaluation of a genetics education booklet for retinoblastoma

Abstract

Background Parents and survivors of retinoblastoma often hold misconceptions about the disease and desire more extensive and detailed information about its genetic 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 comprehensiveness 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 booklet in a prospective, pragmatic trial to evaluate its efficacy.