OPTN/UNOS Transplant Coordinators Committee Fall 2014

Recent Public Comment Proposals Proposal to Notify Patients Having an Extended Inactive Status Will not submit to Board in Nov. 2014 Exploring educational efforts Will review data and revisit proposal What types of patient notification resources/tools would be helpful to patients and centers? As you all know, the Proposal to Notify Patients Having an Extended Inactive Status went out for public comment this past spring. To remind you, the proposal would have required transplant hospitals to notify in writing any of their candidates who had been inactive for 90 consecutive days, 365 consecutive days and every year thereafter. This notification would make those candidates aware of their inactive waiting list status and allow them to be proactive in reactivating their status. The proposal had several goals: Increase access to transplant (for all programs not just Kidney) by informing candidates with an extended inactive status that they are not eligible to receive an organ offer Improve communication between transplant hospitals and their candidates regarding waiting list status and the implications of being inactive Promote effective and safe patient care. Common public comment themes from the regional meetings, other OPTN Committees, and the public were that the proposal would cause an increased burden on transplant centers and it would be difficult for centers to maintain compliance. Other comments requested that the Committee consider alternative notification methods and provide patients and centers with educational resources. Based on these comments, the Committee decided not to submit the proposal to the Board in November. Instead, we will explore ways to inform the transplant community of effective patient notification practices. We will also review the data and revisit the proposal after KAS has been implemented for six months and one year to see if it has any effect on the inactive waiting list. The Committee would like your feedback on what types of patient notification resources or tools might be helpful to patients and centers.

Ongoing Committee Initiatives Tiedi Documentation Project Identified problems with existing data field descriptions on OPTN forms Fields that lack sufficient detail Confusing or incorrect descriptions Identified fields for other committees to review The Committee recently completed reviewing all fields on the Tiedi data collection forms (TCR, TRR, TRF, PTM, DDR) with the goals of improving the accuracy and completeness of OPTN data and identifying opportunities to make forms simpler and fields easier to understand. In some cases, UNOS staff were able to immediately revise help documentation based on the Committee recommendations. They identified problems with existing field definitions and help documentation, responding to questions about each field, including questions such as: Is this description clear?  How could it be improved? Is this description complete? How could it be improved? Can transplant professionals obtain the information requested on the form from the patient’s medical record?   In addition to reviewing the help documentation, the Committee identified some fields that appeared to be either research in nature or no longer applicable, and have suggested those fields be considered for deletion. The TCC will send all questions and suggested revisions to current fields to the appropriate committees for them to review. All currently optional fields will be deleted within the Tiedi forms with the next OMB update (scheduled for Spring 2015).

Additional Information Join the transplant coordinators listserv at http://groups.yahoo.com/ Finally, transplant coordinators are encouraged to join this listserv. Membership to this listserv is limited to transplant coordinators, however, so they can ask questions and share ideas with each other in a collegial environment.

Questions? Laurie Williams RN, BSN, MSN Committee Chair williamsl@unmc.edu Regional Rep name (RA will complete) Region X Representative email address Angel Carroll MSW Committee Liaison angel.carroll@unos.org