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Updated: Apr 11, 2026
Reconstruct Human Retinoblastoma In Vitro
Published on: October 11, 2022
Breaking down barriers to communicating complex retinoblastoma information: can graphics be the solution?
Hannah H Chiu1, Helen Dimaras2, Rob Downie3
1Department of Ophthalmology and Vision Sciences, Faculty of Medicine, University of Toronto.
Insights
Parents using the Disease-Specific electronic Patient Illustrated Clinical Timeline (DePICT) tool showed good understanding of complex retinoblastoma treatment options. This visual aid can improve the informed consent process for families facing this rare eye cancer.
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.
Objective:
To investigate the impact of a graphical timeline summarizing bilateral retinoblastoma disease and treatment outcomes on parents' understanding of complex medical information.
Design:
Cross-sectional survey.
Participants:
Parents of children with retinoblastoma who were being actively managed at The Hospital for Sick Children were recruited. Forty-five parents from 42 families participated.
Methods:
After a standardized presentation on retinoblastoma and visual tool named Disease-Specific electronic Patient Illustrated Clinical Timeline (DePICT), parents completed a 19-item questionnaire designed to assess their understanding of treatment choices for 2 eyes in bilateral retinoblastoma as communicated using DePICT. SPSS was used to perform statistical analysis.
Results:
Forty-five parents from 42 families participated (65% female). Median age of participants was 34 years. Median level of participant education was completion of college/trade school. The median level of annual income was $40,000 to $70,000 CDN. Median time since diagnosis of retinoblastoma in their child was 13.5 months. Twenty-three (51%) participants were parents of children with unilateral retinoblastoma, and 22 (49%) were parents of children with bilateral retinoblastoma. Median number of correct answers was 15 of 19, and mean score was 77%. Normal distribution of scores was noted. English as a first language was significantly associated with score (p = 0.01). No significant association was observed between other variables and score in all analyses.
Conclusions:
This study builds on the validation of DePICT by demonstrating that parents can achieve good comprehension even when considering choices for treatment for 2 eyes with bilateral retinoblastoma. Clinical application of this tool can enhance the consent process.
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