Access to Transplantation

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

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• Who am I
• and
• What is MNIT?

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Agenda

• Problem
• Reality of the Situation
• A Solution, Reason to believe
• Program to Improve Access Understanding
• Results
• Q A

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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

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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

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Need

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

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The Reality

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

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The Transplant Process

• Evaluation requires doctors visits and follow-up
• Often frustration with process
• Takes time
• Post-transplant
• Requires lifetime of caring for transplant

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The Adjustment to Transplantation

• Not prepared
• Overwhelmed
• Depressive symptoms
• Anxiety
• Unrealistic expectations

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Added Challenges

• Limited traditional education
• English-language skills
• Grasping the burden

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A Solution

• A One-on-One Renal Disease Education Program

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Reason to Believe

• Results information learned from evaluating the
  pilot program at MNIT

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The Program

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

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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

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Program Goals

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

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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

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Secondary Goals

• Improve patient compliance before and after
  transplantation
• Improve patients communication with their
  medical team
• Improve graft survival outcomes

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The Peer Educator

• Shared experience
• Trained with specific protocol
• Patient knows what is best
• Listen and provide support

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Overall Ethnicity
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Pre- Post-Test ComparisonTotal Correct Answers
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Opinions Are Important

• Participant Survey
• Dialysis Staff Survey
• Peer of Participant Survey

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Participant Survey (173 Surveys)Overall, I
have a better understanding of kidney
transplantation.
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Participant Survey (173 Surveys)I have learned
valuable information that will help me make a
decision about my treatment.
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Participant Survey (173 Surveys)This program
informed me of the tremendous commitment in
caring for a transplanted organ.
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Participant Survey (173 Surveys)This program
informed me of the tremendous commitment in
caring for a transplanted organ.
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Peer of Participant Survey (172 Surveys)The
participant became more proactive in his
healthcare.
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Participant SurveyI felt comfortable asking
questions and addressing concerns with the Peer
Educator.
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Participant SurveyI recommend this program to
other patients.
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In Summary

• Meeting the needs of those who have difficulty
  accessing healthcare or information
• Benefiting from Shared Experience

The Process of Giving Life
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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

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Sincere Thanks!

• Nicole Pinkerton, MA, MFT
• Mendez National Institute of Transplantation
• 213.413.2779 ext 170
• nicole.pinkerton_at_transplantation.com