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A Thesis entitled Factors that Explain and Predict Organ Donation Registration: An Application of the Integrated Behavioral Model by Matthew Robert Jordan Submitted to the Graduate Faculty as partial fulfillment of the requirements for the Masters of Science Degree in Health Outcomes and Socioeconomic Sciences ________________________________________ Dr. Sharrel L. Pinto, Committee Chair ________________________________________ Dr. Timothy R. Jordan, Committee Member ________________________________________ Dr. Cindy S. Puffer, Committee Member ________________________________________ Dr. Amanda Bryant-Friedrich, Dean College of Graduate Studies The University of Toledo August 2017 Copyright 2017, Matthew Robert Jordan This document is copyrighted material. Under copyright law, no parts of this document may be reproduced without the expressed permission of the author. An Abstract of Factors that Explain and Predict Organ Donation Registration: An Application of the Integrated Behavioral Model by Matthew Robert Jordan Submitted to the Graduate Faculty as partial fulfillment of the requirements for the Masters of Science Degree in Health Outcomes and Socioeconomic Sciences The University of Toledo August 2017 Background: Organ transplantation became a new hope for those living with end-stage organ disease. However, the number of patients waiting for this procedure greatly exceeds the number of available donors. This separation leads to the death of almost 30 Americans per day who are waiting for this life changing procedure. Although Americans have shown a high level of support for organ donation, a large gap exists between the support and intention to register. As one of the most trusted and accessible healthcare professionals, pharmacist may have an opportunity to provide expanded services and education to the public and patients about organ donation. This study looks to understand what motivates registration as an organ donor and identify perceptions of the public about pharmacist-driven education on the process. Methods: This is a cross-sectional, survey- based, exploratory study. A survey instrument was designed and validated. Following pilot testing, the survey was released electronically using Amazon Mechanical Turk. Participants were linked to the survey who are U.S. citizens/permanent residents over the age of eighteen. The 88-item, 10-section survey is based on the Integrated Behavioral Model (IBM) and examines attitudes, perceived norms, and perceived control associated with becoming an organ donor. Three questions also examine their perceptions of pharmacists’ role in educating the public about organ donation and whether they feel others would be receptive to this education at the pharmacy. Additional questions examine the impact of media messages, religion, and other common misconceptions of organ donation on the intent to register. A link to Donate Life America is also available electronically to participants who indicate interest in obtaining more information. Results: A total of 523 usable responses were collected out of 551 (95% completion) with 184 (35%) identified as not being registered donors. Non-donors were significantly more likely to hold negative attitudes and less awareness of those around them being registered, when compared to non-donors. Attitudes were found to be the most significant predictor of both past behavior (OR: 1.154, CI: 1.097-1.214, p < 0.001) and future intention (OR: 1.108, CI: 1.018-1.206, p = 0.023), when compared against registered donors. Being of lower financial status and of the Asian American race/ethnicity were associated with poorer intention to register as an organ donor. Attitude was significantly correlated with intention (r = 0.362. p < 0.05), as well as perceived norms (r = 0.204, p < 0.05), positive perceived behavioral control (r = 0.451, p < 0.05), and self-efficacy (r = 0.204, p < 0.05). Regardless of registration status, respondents did not believe that educating the public on organ donation registration was not an appropriate role for a pharmacist (n = 267, 51.1%) or that people would be receptive to the question about organ donation by the pharmacist during a routine pharmacy visit (n = 302, 57.7%). This thesis is dedicated to My parents – Mark and Renee Jordan To my younger brothers – David and Andrew Jordan And to anyone who proudly owns the title of a Brother of Kappa Psi Pharmaceutical Fraternity, Inc. Acknowledgements First, I want to acknowledge my major adviser and guide through this process, Dr. Sharrel Pinto. You have been both a mentor and a second mother, working tirelessly to provide us with a strong education and great experiences. Thank you for everything you have done and your constant love and support, because this project would not be possible without you. Dr. Timothy Jordan, thank you for taking part in this committee and your dedication to its success. Your dedication to your students is unmatched, and without you, this survey would not have been as strong as it is now. Thank you for all you have done, and putting up with my constant questions about health behavior theory. I have learned so much from you, and I hope to apply much of it to my future career and research. Dr. Cindy Puffer, thank you for being one of the most supportive and positive people I know. It has been an absolute pleasure getting to know you more over the course of becoming a part of my committee, and your help bringing pharmacists into organ donation education has been invaluable. Joseph and Judith Conda, you are the most generous people I have known. Your financial support of the Health Outcomes and Socioeconomic Sciences (HOSS) program at the University of Toledo has given me many opportunities to advance pharmacy practice and research in ways that I never thought possible. Thank you from the bottom 1 of my heart, and I hope to one day emulate your generosity to the College of Pharmacy and Pharmaceutical Sciences. Jessica Kruger (Sloan), your assistance with Qualtrics and getting the survey prepared and launched was an enormous help to me. I would have probably struggled for hours doing what you did within minutes. I know you have been working hard with your dissertation and other commitments you had as well, but I sincerely appreciate your time and efforts in helping me. You were a great mentor and guide along the way with Dr. Jordan, and I wish you the best as you move on into your career. I would like to acknowledge the following individuals for their support towards strengthening the project and making it what it is today: Josh Spayde, Mark Wagner, John Fairchild, Sara Sawicki, Hanna McLaughlin, Paul Knecht, and Alyssa Pennington. Finally, I would like to recognize my colleagues and peers for their support and guidance through this process over the years: Feyikemi Osundina, Janvi Sah, Angela Simon, Kelsey Dorka, Rebekah Panak, Andrew Brinkerhoff, Alexandra Born, Tessa Hastings (Conner), Dr. Kevin Omerza, Dr. Diane Cappelletty, Dr. Michael Rees, Dr. Jorge Ortiz, and Dr. Kelly Buschor. 2 Table of Contents Abstract .............................................................................................................................. iii Acknowledgements ..............................................................................................................1 Table of Contents .................................................................................................................3 List of Tables ......................................................................................................................6 List of Figures ......................................................................................................................8 List of Abbreviations ...........................................................................................................9 1 Introduction………. ...............................................................................................11 1.1 Advancement in Solid Organ Transplant .........................................................11 1.2 Becoming a Transplant Candidate ...................................................................13 1.3 Health in the U.S. .............................................................................................14 1.4 Barriers to Donation. ........................................................................................15 1.5 Pharmacists as Educators .................................................................................17 1.6 Need for Research. ...........................................................................................18 1.7 Significance......................................................................................................19 1.8 Research Goal. .................................................................................................19 1.9 Research Objectives. ........................................................................................20 1.10 Research Questions. .......................................................................................20 2 Review of the Literature ........................................................................................22 2.1 Discussing Organ Donation and Procedures....................................................22 2.2 Enhancing the Transplant Procedure. ..............................................................24 3 2.3 The U.S. Health Status. ....................................................................................25
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