What are the long-term consequences of bone marrow and peripheral blood stem cell (PBSC) donation? Specifically,
- Is there any intermediate or longer-term impact on the health of a bone marrow donor, especially one who donates more than once?
- Are there intermediate or long-term effects on a PBSC donor from taking filgrastim?
Marrow donation is a common procedure now, yet there have not been the research studies on long-term effects we would like to see. One German study of 40 donors noted “no long-term effects” observed in followup. We have not found other longitudinal studies.
Interestingly, the one area that has received the most analysis is the psychological impact of marrow donation:
- A University of Pennsylvania study measured the psychological impact of bereavement on sibling bone marrow donors. Prior to donation, all donors reported high levels of self-esteem, mastery, happiness, and satisfaction. Following donation, donors whose sibling-recipient died felt less positively about the value of their donation over time. However, they experienced improvements in self-esteem, happiness, and satisfaction compared to donors whose sibling-recipients were still living.
- University of Massachusetts nursing study of the donation experience is based on interviews with 12 donors. The study revealed that the donors had little or no reluctance to donate and would do so again. The donors felt “deep personal satisfaction and gratitude.” Stressful aspects on the donation experience included unanticipated pain after donation, negative outcome of the transplantation, and relationships with the bone marrow recipients’ families. The study recommends improvements in education prior to donation as well as the monitoring of the donor’s psychological well-being throughout and after the procedure.
- A study of 37 Chinese bone marrow donors illustrates the significance of culture in the donation experience. In this case, the study authors found the following perceptions of the donation experience: association with bad and good fortune; religious concerns associated with complete bodies; barriers posed by the extended family; fulfilling personal identities linked to perceptions of altruism, reciprocity and generosity; and the differences between the expectations and realities of the donation experience. They note “the act of body fluid donation cannot be isolated from the expectation of life-long immersion in the dominant social and cultural processes of the time.” Donation in China is viewed as more of a self-fulling act than a social act. The study suggests providing more educational and emotional support to donors.
An issue for anonymous donors is whether you will be able to contact your recipient and get updates on their health after your donation. How contact happens depends on the policy of the transplant center. Often there is a one year waiting period before any communication is permitted between the donor and recipient. Keep in mind that not all recipients who receive a marrow transplant survive. Also, the recipient must agree to the contact. If you are open to contact with the recipient, check with the transplant team about their policy.