Breaking down barriers to communicating complex retinoblastoma information: can graphics be the solution?

Area of Science:

• Pediatric Oncology
• Ophthalmology
• Medical Informatics

Background:

• Retinoblastoma is a rare pediatric eye cancer requiring complex treatment decisions.
• Effective communication of medical information is crucial for parental understanding and informed consent.

Purpose of the Study:

• To evaluate the impact of a graphical timeline, the Disease-Specific electronic Patient Illustrated Clinical Timeline (DePICT), on parents' comprehension of bilateral retinoblastoma treatment.
• To assess the effectiveness of DePICT in communicating complex medical information to parents.

Main Methods:

• A cross-sectional survey was conducted with 45 parents of children with retinoblastoma.
• Participants received a standardized presentation on retinoblastoma and the DePICT tool.
• A 19-item questionnaire assessed parents' understanding of treatment choices for bilateral retinoblastoma using DePICT.

Main Results:

• Parents achieved a median score of 15 out of 19 correct answers (77% mean score) on the understanding questionnaire.
• English as a first language was significantly associated with higher scores (p = 0.01).
• No other demographic variables showed a significant association with comprehension scores.

Conclusions:

• The DePICT tool facilitates good comprehension of complex retinoblastoma treatment options for parents, even for bilateral cases.
• Clinical implementation of DePICT can enhance the patient-physician communication and informed consent process.