Experiences with Design and Implementation of a Related Donor Coordinator Position

Purpose:  At our center, related donors were cared for by our Patient Coordinators. In 2012, we decided to create a new position, a Donor Coordinator position, which was modeled after the NMDP workup specialist position. Our goal was to provide related donors with the same education, care, and emotional support that Unrelated donors receive through the National Marrow Donor Program (NMDP). We also wanted to improve the overall donor experience and service that the donors receive. Also, due to FACT standards, we found it necessary to create separate care teams for the donors and recipients, while also being able to offer a donor advocate to all donors.     

Scope: We evaluated a related donor’s journey from initial testing to follow-up.  Key issues found were education prior to testing, donor safety based on past medical history, and administration of filgrastim. 

Method: The Donor Coordinator position is in charge of the donor’s care and confirms separate teams for the donor and recipient, while also serving as an advocate.

Education prior to initiation of testing was a main goal.  A health history questionnaire and educational documents were created for the initial screening, testing, and education of donors.  Donors are educated of the whole process by phone prior to testing and are screened by the Donor Coordinator.  Screening of donors is performed with a standard health history questionnaire.  Any medical conditions that are present are reviewed by the Donor Coordinator who consults the NMDP’s Medical Assessment at HR/CT/WU. If the NMDP assessment suggests a deferral, then the Donor Coordinator will send this information to our Transplant Physician to make the final decision on whether to proceed with testing. If there are no concerns regarding a patient’s medical history we then receive consent via a monitored phone call for consent, or by mailing the consent.  Once we receive consent for tissue typing, then we proceed with testing. 

When a matched related donor is found, the Donor Coordinator performs an information session prior to their medical evaluation.  This helps donors feel comfortable with the donation and helps answer all of their logistical questions prior to seeing our clinical team. 

Once cleared, the Donor Coordinator arranges for the donors filgrastim injections to be given by a home healthcare nurse.

Results/Conclusions: Our program has received great feedback from donors since we started the Donor Coordinator position.  We have been able to work through donor concerns in a private manner.  We have chosen not to test or use donors based on their concerns and this position has helped with family dynamics. Many of these steps have helped donor’s feel that they are important in this process and has helped them feel comfortable with the whole donation.  We are in the process of creating a survey to assess the donor’s experience with the Donor Coordinator, our medical team, and the donation process.