Access to Transplantation Educating & Preparing Dialysis Patients for Transplantation

1. Access to Transplantation Educating & Preparing Dialysis Patients for Transplantation Nicole M. Pinkerton, MA, MFT Consultant, Development & Education

2. Who am I and What is MNIT?

3. Problem • Underserved populations have difficulty accessing transplantation • Lower referrals • Takes longer to get on the waiting list • Patients not prepared for living with a transplant

4. Road Block • Health Literacy • patients ability to understand and process basic health information and services needed to make informed decision • Low reduces success of treatment

5. Need • Dialysis patients need comprehensive education • To gain access, especially underserved populations • Allow patients to make an informed decision

6. The Reality • Transplantation is not for everyone • Advantages and disadvantages • Considerations • Health status • Support System • Financial means • Compliance

7. The Transplant Process • Evaluation requires doctor’s visits and follow-up • Often frustration with process • Takes time • Post-transplant • Requires lifetime of caring for transplant

8. The Adjustment to Transplantation Not prepared Overwhelmed Depressive symptoms Anxiety Unrealistic expectations

9. Added Challenges Limited traditional education English-language skills Grasping the burden

10. Reason to Believe Results & information learned from evaluating the pilot program at MNIT

11. The Program • One-on-One Renal Disease Education Program • Personalized • For patients, by recipients • Provided at dialysis center during dialysis

12. The Program • Who qualifies • Any person whom a nephrologist would refer to a transplant center for evaluation • New to dialysis • Already listed and waiting for an organ • Language barriers

13. Program Goals Increase access to transplantation Inform about the treatment option Inform about personal responsibility Being proactive and self-sufficient Consideration of living donation

14. Secondary Goals Prepare the participant for transplant process Encourage participant to maintain/improve health prior to transplantation Provide education and support while waiting for a transplant

15. Secondary Goals Improve patient compliance before and after transplantation Improve patients’ communication with their medical team Improve graft survival outcomes

16. The Peer Educator Shared experience Trained with specific protocol Patient knows what is best Listen and provide support

17. Overall Ethnicity

18. Pre-& Post-Test ComparisonTotal Correct Answers

19. Opinions Are Important • Participant Survey • Dialysis Staff Survey • Peer of Participant Survey

20. Participant Survey (173 Surveys)“Overall, I have a better understanding of kidney transplantation.”

21. Participant Survey (173 Surveys)“I have learned valuable information that will help me make a decision about my treatment.”

22. Participant Survey (173 Surveys)“This program informed me of the tremendous commitment in caring for a transplanted organ.”

23. Participant Survey (173 Surveys)“This program informed me of the tremendous commitment in caring for a transplanted organ.”

24. Peer of Participant Survey (172 Surveys)“The participant became more proactive in his healthcare.”

25. Participant Survey“I felt comfortable asking questions and addressing concerns with the Peer Educator.”

26. Participant Survey“I recommend this program to other patients.”

27. In Summary Meeting the needs of those who have difficulty accessing healthcare or information Benefiting from Shared Experience The Process of Giving Life

28. In Summary • Program goals being met: • Increased access to transplantation • Increase knowledge about transplantation • Become more proactive in their healthcare • Increase living donation discussions amongst family members

29. Sincere Thanks! Nicole Pinkerton, MA, MFT Mendez National Institute of Transplantation 213.413.2779 ext 170 nicole.pinkerton@transplantation.com