Are on-line patient portals meeting test result preferences of caregivers of children with cancer? A qualitative exploration

Background: Management of pediatric cancer entails frequent laboratory and radiology testing to monitor response to treatment, side effects, and possible relapse of disease. Little is known about how caregivers of children with cancer would like to receive results of these tests and whether on-line patient portals may meet those preferences. Procedures: One-on-one semistructured interviews were conducted with 19 caregivers of children with cancer purposively sampled for breadth on demographic characteristics. Inductive qualitative content coding/analysis was utilized to distill caregiver's preferred methods for test result acquisition and their views of using an on-line patient portal to do so. Results: The relative prioritization of speed of information and mode of communication (i.e., “in person,” by phone, etc.) revealed three preference styles. Factors including type of testing, type of result, and the time course within their child's care modified these preferences, and the desire to reduce anxiety played a central role. Caregivers recognized advantages of portal use including getting results “fast,” being able to visualize trends in results, “keeping a record,” and not interfering with clinic flow. Perceived disadvantages included the results being “complicated” or easily misunderstood, and learning results prior to disclosure by care team. Conclusion: This study provides insight into the importance of understanding of how caregivers want test results and how they utilize the portal. Preferences for result acquisition vary on many factors and include the desire to decrease anxiety. As portal use increases, we have a duty to integrate this technology responsibly.