Y. J. Bababekov1, F. C. Njoku1,2,3, B. Cao1,2,4, J. T. Adler1, J. J. Pomposelli5, D. C. Chang1, H. Yeh2 1Massachusetts General Hospital,Codman Center For Clinical Effectiveness In Surgery/ Surgery/Harvard Medical School,Boston, MA, USA 2Massachusetts General Hospital,Transplantation/Surgery/Harvard Medical School,Boston, MA, USA 3University Of California – Irvine,School Of Medicine,Irvine, CA, USA 4University Of Rochester,School Of Medicine,Rochester, NY, USA 5University Of Colorado Denver,Transplant Surgery/Surgery/School Of Medicine,Aurora, CO, USA
Introduction: Patient education during the transplant process is known to increase compliance and access to transplantation which predict better patient outcomes. Health literacy is associated with compliance; however, patients and caregivers may have suboptimal liver transplant health literacy. In response to the Plain Writing Act of 2010, the Centers for Disease Control and Prevention developed the Clear Communication Index (CCI) to create and assess public communication materials with a focus on readability. This is of increasing importance given the organ donor shortage and unacceptably high rate of rejection from non-adherence to treatment protocols. However, transplant center educational content varies and the readability of educational materials is unknown. We therefore assessed the existence and quality of education materials available on line at United Network for Organ Sharing (UNOS) and liver transplant centers across the United States.
Methods: The Scientific Registry of Transplant Recipients was searched for adult liver transplant centers (n=115). Two independent reviewers assessed patient education information on the websites of UNOS and all liver transplant centers for readability via the Clear Communication Index (CCI), developed by the Center for Disease Control and Prevention. The CCI is a validated tool of 20 scored items that yield a percentage score; a score ≥ 90% indicates the communication material is easy to understand.
Results: All liver transplant centers had websites, but only 39% (45/115) had printable PDFs; UNOS had both a website and PDF material. The median CCI score for websites and PDFs was 72.6% (IQR 67.5%, 75.0%) and 70% (IQR 64.3%, 75.0%), respectively. No patient information website or PDF had a CCI score ≥ 90% (Figure 1). State, organ procurement organization (OPO), number of centers per OPO, or UNOS region did not predict CCI scores for websites or PDFs. There was no difference in CCI scores by reviewer.
Conclusion: Patient education materials for liver transplantation may be presented in a way that is not easy to understand for patients and caregivers, and would benefit from increased quality of readability. Access to care and patient compliance may be improved with revision of patient education materials.
