*Purpose: Successful outcomes following transplantation (Tx) require a thorough understanding of the Tx process, a close partnership between the patient and transplant center, and life-long adherence to a complex immunosuppressive regimen. Providing robust customized patient education can have significant long-term benefits for patients. This study seeks to assess the patient’s perspective on Tx information needs to optimize education materials.

*Methods: We administered a 37-question survey to adult Tx recipients (heart, liver, lung, kidney/pancreas) at our institution to evaluate multilevel factors (cognitive, attitudinal, behavioral, psychological, and social) and educational needs. The survey was distributed in the outpatient and inpatient settings over six months. Tx recipients were asked to reflect on their pre-transplant waiting list experience and education they received regarding Tx, with an emphasis on medications and the importance of adherence.

*Results: A total of 50 patients completed the survey. Two thrds of patients were Caucasian males with an average age 55.7±12 years and 30% of patients had a Bachelor’s degree. Patients reported feeling anxious, stressed, and nervous overall. Patients indicated that education before Tx was generally limited, focusing on the need and risks/benefits of Tx. When asked to reflect on medication-related teaching, 40% of patients reported that it was insufficient, 40% adequate amount, and 20% recalled an overwhelming amount. When asked about their feelings regarding the need for life-long anti-rejection medications, 75% had positive or neutral feelings while 25% expressed a negative attitude towards strict medication adherence. Three-fourths of patients reported that discussions around the need of strict medication adherence had no impact on their behavior towards adherence, while remaining said it caused them to become diligent. Patients felt they were most unprepared for the complications, pain, and post-operative care after Tx. When asked what the Tx center could do differently to better prepare them, patients suggested the development of focused education about the effects of the surgery on life, including preparation for complications and the need for long-term immunosuppression is important. Patients also indicated that they preferred visual illustrations and words, listening to spoken words, and hands-on simulations. In addition, quizzes would ensure they have retained knowledge.

*Conclusions: Patient engagement is critical for successful outcomes in the realm of Tx. Involving patients as a member of the ongoing Tx education process is a vital partnership that Tx centers can implement to ensure that the materials they develop are effective for their population.

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