A visual approach to providing prognostic information to parents of children with retinoblastoma.
OBJECTIVE
Parents must rapidly assimilate complex information when a child is diagnosed with cancer. Education correlates with the ability to process and use medical information. Graphic tools aid reasoning and communicate complex ideas with precision and efficiency.


METHODS
We developed a graphic tool, DePICT (Disease-specific electronic Patient Illustrated Clinical Timeline), to visually display entire retinoblastoma treatment courses from real-time clinical data. We report retrospective evaluation of the effectiveness of DePICT to communicate risk and complexity of treatment to parents. We assembled DePICT graphics from multiple children on cards representing each stage of intraocular retinoblastoma. Forty-four parents completed a 14-item questionnaire to evaluate the understanding of retinoblastoma treatment and outcomes acquired from DePICT.


RESULTS
As a proposed tool for informed consent, DePICT effectively communicated knowledge of complex medical treatment and risks, regardless of the education level. We identified multiple potential factors affecting parent comprehension of treatment complexity and risk. These include language proficiency (p=0.005) and age-related experience, as younger parents had higher education (p=0.021) but lower comprehension scores (p=0.011), regardless of first language.


CONCLUSIONS
Provision of information at diagnosis concerning long-term treatment complexity helps parents of children with cancer. DePICT effectively transfers knowledge of treatments, risks, and prognosis in a manner that offsets parental educational disadvantages.
Panton
Rachel L
RL
Department of Ophthalmology, Hospital for Sick Children, University of Toronto, Toronto, Ont., Canada.
Downie
Robert
R
Truong
Tran
T
Mackeen
Leslie
L
Kabene
Stefane
S
Yi
Qi-Long
QL
Chan
Helen S L
HS
Gallie
Brenda L
BL
D001294:Attitude to Health; D001364:Awareness; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D010290:Parents; D010353:Patient Education as Topic; D011379:Prognosis; D019572:Retinal Neoplasms / Q000601:surgery*; D012175:Retinoblastoma / Q000601:surgery*; D012307:Risk Factors; D012944:Social Support; D011795:Surveys and Questionnaires; D014796:Visual Perception / Q000502:physiology*