Additional data on long-term outcomes incorporated into OPTN living donor data
Published on: Monday, April 3, 2023
The Organ Procurement and Transplantation Network (OPTN) Living Donor Committee was recently briefed about the incorporation of additional data on living donor long-term outcomes into OPTN data and reporting. These data include approximately 1776 additional verified deaths among all living donors since 1994, and will be added to the national OPTN standard transplant analysis and research (STAR) file in April 2023.
The enhanced data allow review of living donor deaths that occurred more than two years after donation, which is beyond the OPTN policy-stipulated mandatory reporting period. In most cases, the additional verified deaths occurred well after donation, with an average time of 18.5 years between donation and death. The incorporation of this newly-verified data has the potential to benefit the donation and transplant community's understanding of living donation. There are no impacts on policy monitoring or research related to transplant candidate or recipient outcomes.
How the OPTN identifies living donor deaths
The OPTN and its members use information on living donor deaths for policy monitoring, program evaluation, and patient outcomes assessment. OPTN policy currently requires transplant programs to follow up on the status of living donors for a minimum of two years, and recovery hospitals to report deaths within two years of donation as soon as they become aware of them.
Additionally, the OPTN identifies living donor deaths when living donors subsequently appear on organ transplant waiting lists and experience a death while waiting for an organ transplant; the OPTN crosschecks internal records across all available OPTN data to locate these individuals.
The OPTN has collected data on living donor deaths since 1999 and makes it available in OPTN data reporting and in external STAR files. STAR files are limited datasets that contain de-identified patient-level information about transplant recipients, deceased and living donors, and waiting list candidates back to Oct. 1, 1987. The national STAR file is produced quarterly.
Verifying living donor deaths through external sources
Long-term monitoring of living donor outcomes presents challenges for the OPTN member community. Most of these deaths occur many years after donation and outside of the two-year post-donation time frame where OPTN members are required to report under current policy. Importantly, only those OPTN member-reported deaths and deaths from external sources that are also verified against a second external source are permitted to be released at the individual level.
An external, administrative source of deaths across the United States is being used to identify deaths among living donors that OPTN members have not reported. This secondary external source requires that the OPTN first verify those deaths found in their records against an additional external source before adding them to OPTN records. These are the “verified” deaths being added to OPTN data on living donors. The death information being added does not provide any information about whether the death was related to the act of donation or suggest by itself that living donation is riskier than was previously known.
The living donor deaths from this external source will be added monthly to OPTN data, and will be captured in every quarterly update of the national STAR file. The OPTN continuously evaluates the STAR files to ensure they contain the most current and complete data reported to the OPTN. The OPTN provides these files for use by quality improvement professionals, public health entities, academic researchers, and others.
More about OPTN data
The OPTN's secure transplant information database contains all national data on:
- Candidate waiting list information
- Organ donation and matching
- Transplantation
The OPTN also has visual dashboards that allow users to explore current and historic donation and transplant trends, as well as trends related to access to deceased donor transplants among active candidates on the waiting list in the United States.
- Explore national trends in the OPTN Metrics Dashboard
- Explore equity trends in the Access to Transplant Dashboard
Anyone may request data from the OPTN. If you are at an OPTN member organization, please submit your data request inside the OPTN Computer System (known as Secure Enterprise).
For all other data requests, use this form on the OPTN website, after reviewing data request instructions.
Questions?
Please contact STARfile@unos.org