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

Hannah H Chiu, Helen Dimaras, Rob Downie, Brenda Gallie

Journal: Canadian journal of ophthalmology. Journal canadien d'ophtalmologie 2016;50(3):230-5

PMID: 26040224

Full Text on Elsevier Science View on PubMed

Abstract

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.

Address: Department of Ophthalmology and Vision Sciences, Faculty of Medicine, University of Toronto.; Department of Ophthalmology and Vision Sciences, Faculty of Medicine, University of Toronto; Division of Hematology/Oncology, The Hospital for Sick Children, Toronto.; Research, Policy and Planning, Fanshawe College, London.; Department of Ophthalmology and Vision Sciences, Faculty of Medicine, University of Toronto; Department of Ophthalmology and Vision Sciences, The Hospital for Sick Children; Ontario Cancer Institute, Princess Margaret Hospital, Toronto, Ont.. Electronic address: [email protected].

DOI: 10.1016/j.jcjo.2015.02.003

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MeSH Terms: Adult, Caregivers, Communication Barriers, Cross-Sectional Studies, Decision Support Techniques, Female, Health Communication, Health Surveys, Humans, Infant, Male, Middle Aged, Parents, Patient Education as Topic, Retinal Neoplasms, Retinoblastoma, Surveys and Questionnaires, Treatment Outcome, Young Adult