Aligning Words With What Matters: Evaluation of a Nationwide Sample of Pediatric Kidney Transplant Educational Materials.

BACKGROUND

Kidney transplant education promotes early partnership between children, caregivers, and clinicians by sharing information and fostering engagement to maximize outcomes. We evaluated educational materials' accessibility, alignment with shared priorities, and portrayal of life participation.

METHODS

We performed a content analysis of pediatric kidney transplant centers' educational materials to assess how they addressed 4 key priorities: kidney function, infection, survival, and life participation. We assessed printed materials' readability using Simple Measures of Gobbledygook and Flesch-Kincaid tools and audiovisual materials' understandability and actionability using the Patient Education Materials Assessment Tool.

RESULTS

Of 73 centers approached, 23 (32% response) provided educational packets. Only 6 packets (26%) included materials targeted to children. Average reading grade level was high (SMOG 8.9 ± 1.7; Flesch-Kincaid 9.5 ± 1.8), with only 1 packet written at sixth-grade level. Audiovisual materials were not highly understandable or actionable. Among key priorities shared by children, caregivers, and clinicians, packets most frequently addressed infection, followed by kidney function, life participation, and survival. We identified 3 themes reflecting portrayal of the key priority of life participation: hope and caution-a proactive, optimistic tone about certain aspects of life participation and cautious tempering of expectations for others; maximizing physical transplant benefits-detailed guidance on physical activity, but limited attention to psychosocial well-being; and being "normal"-a focus on restoring physical health while framing mental and emotional distress as potential threats to normalcy.

CONCLUSIONS

There are important opportunities to enhance transplant educational materials by tailoring content to children, increasing accessibility, and more consistently and comprehensively addressing concerns about life participation after transplant.