Neurocognitive passport: A novel feedback tool for pediatric patients with sickle cell disease

Abstract

Sickle Cell Disease (SCD) is associated with neurocognitive impairment, and routine cognitive and academic screening is recommended. Traditional reports following testing are often not health literate, limiting the usefulness of evaluations. This study investigated whether a small “passport” summarizing results and recommendations would be helpful in increasing understanding of results and follow-through on recommendations. Participants (N = 46) were randomized to two groups. Following evaluations, the control group received a report in the mail while the experimental group received the report with a printed “passport.” Seven to fourteen weeks after receiving results, a follow-up phone call was conducted to assess recall. Results did not support the effectiveness of a neurocognitive passport for improving understanding or recall of neurocognitive testing results, nor did this approach demonstrate improvement in follow-through on recommendations. However, results did suggest variability in caregiver understanding and recall, suggesting that ongoing efforts to improve outcomes in these domains is important. Follow-up studies should look at other novel methods to achieve this goal.