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. CONCLUSION: 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.

Incomplete and inconsistent information provided to men making decisions for treatment of early-stage prostate cancer.

OBJECTIVES: To determine whether there is a gap between what patients know about early-stage prostate cancer and what they need to know to make treatment decisions, and whether the information patients receive varies depending on their treating physician. METHODS: Needs assessment was performed using a questionnaire consisting of 41 statements about early-stage prostate cancer. Statements were divided into six thematic subsets. Participants used a 5-point Likert scale to rate statements in terms of knowledge of the information and importance to a treatment decision. Information gaps were defined as significant difference between the importance and knowledge of an item. Descriptive statistics were used to describe demographic subscale scores. The information gap was analyzed by a paired t test for each thematic subset. One-way analyses of variance were used to detect any differences on the basis of treating physician. RESULTS: Questionnaires were distributed to 270 men (135 treated by radical prostatectomy, 135 by external beam radiotherapy). The return rate was 51% (138 questionnaires). A statistically significant information gap was found among all six thematic subsets, with five of the six P values less than 0.0001. Statistically significant variation was observed in the amount of information patients received from their treating physicians among four of the thematic subsets. CONCLUSIONS: There is an information gap between what early-stage prostate cancer patients need to know and the information they receive. Additionally there is a difference in the amount of information provided by different physicians.