1. Proposal to Notify Patients Having an Extended Inactive Status Transplant Coordinators Committee Spring 2014

2.  Candidates not consistently informed of their inactive waiting list status  Candidates do not understand what it means to have an inactive waiting list status  Longer time inactive = Less likely to receive a transplant  Over half of candidates inactive for 90 consecutive days will be inactive for a year or more The Problem

3.  Promote effective and safe patient care  Increase access to transplant  Improve communication between transplant hospitals and candidates Goal of the Proposal

4.  Increase awareness of inactive waiting list status  Inform candidates about what it means to have an inactive status  Allow candidates to be proactive in their plan of care How the Proposal Will Achieve its Goal

5.  Written notification and documentation of date must be kept in medical record  Notification must include all of the following:  Most recent inactive date  Candidate cannot receive organ offers while inactive and  Telephone number of the transplant center  Written notification must be sent within 14 days:  90 consecutive days inactive  365 consecutive days inactive  Annually, thereafter, for as long as the candidate remains inactive What Members will Need to Do

6.  Literature reviews suggest:  No benefit from prolonged periods of inactivity  Development of effective strategies for monitoring candidates on the inactive list Supporting Evidence

7. Inactive registrations removed for death/too sick during 2007-2011 Length of time inactive prior to removal Kidney Liver Heart Lung Kidney- Pancreas Intestine Heart- Lung Total 5-10 years 77013957652546181,111 10+ years 5114168020495 Total82115373 25481121,206

8. Supporting Evidence

9. Average number of letters that would have been sent in 2012 had this policy been in place Kidney Liver Heart Lung Kidney- Pancreas Intestine Heart- Lung Total 90 day req. 2053110811942280 1 year req. 11016566633155 Total315471514171575435

10.  Current requirements  Tool to assist programs with tracking candidates Additional Information

11.  Promotes patient safety  Increases access to transplant  Follows existing patient notification policies  Improves quality of patient care and communication Proposal Summary

12.  Allowing other methods of notification  Eliminating 90 consecutive day requirement  Annual notification of inactive patients Feedback Received

13.  Laurie Williams, RN, BSN, MSN, Committee Chair WilliamsL@unmc.edu WilliamsL@unmc.edu  Name Region # Representative Email  Angel Carroll, MSW Committee Liaison Angel.Carroll@unos.org Angel.Carroll@unos.org Questions?