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Kidney Week

Abstract: SA-PO693

Need to Know, Want to Know: Characterization of Pediatric Kidney Transplant Education Materials

Session Information

  • Pediatric Nephrology - 2
    October 26, 2024 | Location: Exhibit Hall, Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category: Pediatric Nephrology

  • 1900 Pediatric Nephrology

Authors

  • House, Taylor R., University of Wisconsin-Madison, Madison, Wisconsin, United States
  • Thomas, Makayla, University of Wisconsin-Madison, Madison, Wisconsin, United States
  • Wightman, Aaron G., Seattle Children's Hospital, Seattle, Washington, United States
  • Pollack, Ari, Seattle Children's Hospital, Seattle, Washington, United States
  • Wong, Susan P.Y., University of Washington, Seattle, Washington, United States
Background

Educational materials are meant to empower patients and families with information about kidney transplant, making their content and accessibility vital to supporting family-centered care and optimizing outcomes.

Methods

We conducted a mixed inductive and deductive content analysis of educational materials used by pediatric kidney transplant centers associated with a national research consortium to assess readability and relevance to four established priorities shared by patients, parents, and clinicians: kidney function, infection, life participation, and survival. We assessed readability using validated measures and summarized data descriptively.

Results

We obtained educational materials from 23 centers (32% response rate), averaging 81±69 pages in total length. Six centers (26%) used materials targeted to pediatric patients. All centers’ materials addressed kidney function and infection, 22 (96%) also addressed life participation, and 18 (78%) addressed survival. Materials tended to feature more pages addressing infection (12±8 pages) and kidney function (10±6 pages) than life participation (7±7 pages) and survival (3±4 pages). Among aspects of life participation, psychological well-being was most frequently addressed (Figure). Over one-third (38%) of all life participation references were negatively framed – discouraging or cautioning aspects of life post-transplant. Mean grade level readability of materials was 8.9±1.7 with Simple Measure of Gobbledygook and 9.5±1.8 with Flesch-Kincaid Grade Level.

Conclusion

Pediatric kidney transplant centers use educational materials that are infrequently targeted to children, exceed recommended readings levels, and unevenly address stakeholder priorities. There is an opportunity to better address child and caregiver prioritized outcomes, particularly life participation, to promote greater goal concordance and shared expectations among patients, families, and clinicians.

Figure: Of pages referencing life participation, percent discussing varying categories of life participation.