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Author Notes:

Corresponding author: Lara.Danziger-Isakov@cchmc.org.

We acknowledge feedback from Nancy Bridges at NIAID on the study design and interpretation of results.

The CTOT-05 consortium members thank the following personnel for the support of the work: Boston Children’s Hospital, Boston MA: William Harmon, Leslie Spaneas, Erin Leone Thakkallapalli, Kate Garrigan, Molly O’Brien, Beatrice Dubert, Stephanie Valcourt-Dexter; Children’s Hospital of New York, New York, NY: Linda Addonizio, Warren Zuckerman, Rose Rodriguez; Children’s Hospital of Philadelphia: Samuel Goldfarb, Rosa Kim, Sara Nguyen; Children’s Hospital of Pittsburgh: Steven Webber, Brian Feingold, Shawn West, Jane Luce; Children’s Hospital Seattle: Ruth McDonald, Jodi Smith, Robert Johnson; Cleveland Clinic, Cleveland, OH: Johanna Goldfarb, Donna Lach; Emory University: Sandra Amaral, Verena Weissenborn, Rachel Dodd, Gail Schwartz, Monica Haughton, Lu Arechiga; Lucille Packard Children’s Hospital at Stanford, Palo Alto, CA: Carol Conrad, Emily Orbe, Nirvi Mistry, Elisabeth Merkel, Suvarna Bhamre; Mattel Children’s Hospital at UCLA, Los Angeles, CA: Eileen Tsai, Maggie Holloway, Claire White; Nationwide Children’s Hospital, Columbus, OH: Don Hayes, Stephen Kirkby, Ashley Nance, Kerri Nicholson, Susan Meyer; Shands Children’s Hospital, Gainesville, FL: Tracie Kurtz; St. Louis Children’s Hospital, St. Louis, MO: Colleen Eisenbarger; Texas Children’s Hospital, Houston, TX: George Mallory, Marc Schecter, Tina Melicoff, Janet Bujan, Charles Sellers, Nicoline Schaap, Mea Ebenbichler; University of Alabama, Birmingham, AL: David Askenazi, Dan Feig, Amy Logue, Stephanie Clevenger, Rajesh Koralkar, Susan Keeling; University of California, San Francisco, CA: Marsha Lee, Stephanie Lemp, Jenny Chu, Vino Laksshamanan.


Research Funding:

The study was supported by a supplement to National Institutes of Health U01 grant (U01 AI077810) awarded to S. Sweet.


  • Science & Technology
  • Life Sciences & Biomedicine
  • Pediatrics
  • Transplantation
  • adherence
  • pediatric
  • solid-organ transplant
  • RISK

Perceived barriers to medication adherence in pediatric and adolescent solid organ transplantation

Journal Title:

Pediatric Transplantation


Volume 20, Number 2


, Pages 307-315

Type of Work:

Article | Post-print: After Peer Review


Comparisons of perceived barriers to adherence in pediatric and adolescent SOT have not been systematically conducted despite association between medication non-adherence and poor outcome. Fifteen centers in CTOT-C enrolled patients in a cross-sectional study. Subjects' guardians completed the PMBS and subjects over eight completed the Adolescent Scale (AMBS). Association of three identified PMBS factors and subject age was assessed. Secondary analyses assessed associations between PMBS, AMBS, and patient demographics. Three hundred sixty-eight subjects or their guardians completed PMBS or AMBS. A total of 107 subjects were 6-11 yr; 261 were ≥12. Unadjusted and propensity-adjusted analyses indicated higher perceived barriers in guardians of adolescents as compared to guardians of pre-adolescents medication scheduling and frustration domains regardless of organ (p < 0.05). PMBS and AMBS comparisons revealed that guardians reported fewer ingestion issues than patients (p = 0.018), and differences appeared more pronounced within younger responders for scheduling (p = 0.025) and frustration (p = 0.019). Screening revealed guardians of older patients report increased perceived barriers to adherence independent of socioeconomic status. Guardians of adolescents reported fewer perceived barriers to ingestion/side effects than patients themselves, particularly in pre-adolescents (8-11 yr). Brief screening measures to assess perceived barriers should be further studied in adherence improvement programs.

Copyright information:

© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd.

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