Contrary to their interpretation,1 Pentz and colleagues’ results support the American Academy of Pediatrics’ (AAP’s) recommendation that a donor advocate (or similar mechanism) be appointed for all minors who are being considered as hematopoietic stem cell donors.2 The primary role of the donor advocate is to help potential donors and their parents understand the donation process and to promote potential donors’ interests and well-being. The article describes a number of situations in which understanding could have been improved. Delaying or preventing donation is a secondary aspect of the advocate’s role, and the need to exercise this authority would not have been expected in such a small sample.
Pentz and colleagues’ article has several significant methodologic limitations. It is based on a secondary analysis of interviews conducted from 2007 to 2010, before the publication of the AAP’s policy statement. This limitation has broader implications than the authors acknowledge. In...
We would like to thank Drs. Ross and Antommaria for their commentary on our article "Unmet Needs of Siblings of Pediatric Stem Cell Transplant Recipients." We join with them in the desire to see a "more positive donor experience," one of our motivations for conducting the secondary analysis. We differ, however, with their claim that our interpretation is contrary to the heart of the AAP recommendation - that an advocate provide education and support for the donor sibling. As we emphasize in the conclusion of the paper, a donor advocate could address the various unmet needs that we identified by providing education prior to typing for all siblings, additional education and support of the donor through the donation process and follow-up post-transplant to assess and ameliorate concerns. In fact, our data and our analysis extend the potential roles of the advocate. Through information-sharing designed to prepare the child family members for the stem cell transplant experience, the advocate could help sustain the siblings' much needed sense that they are part of the family during this difficult time. The surprising and important conclusion of the 162 interviews we conducted with 132 family members over the course of a year was that all child family members could benefit from this information-sharing and support - not just the donor sibling.
As we stated, and as Ross and Antommaria reiterate, our secondary analysis has limitations: the original study was not designed to address the advocacy issue, 2 families whose child died refused further interviews, and our interviews preceded the AAP recommendation. To clarify, we actually interviewed 16/17 (94%) of the eligible donors. One donor refused. Four were too young (< 9 years old), two too old (>21 years old) and 10 families had no matched sibling donor and used cord blood or an unrelated donor.
Because we were quite attuned to the limitations of our secondary analysis, we did not offer an opinion on who would be most appropriate to fulfill the role of advocate. We only noted that our data clearly indicate that a mechanism to provide information and support is needed and should be extended to all child family members. Based upon our interviews, it is clear that this information and support needs to be provided in a way that is respectful of the family as a unit and inclusive of members both at the hospital and at home. We recommend that more focused research be conducted that prospectively documents sibling donor and other child family member preferences for information-sharing and support mechanism/s before, during and following the transplant experience. Again, we thank Drs. Ross and Antommaria for their commentary and we hope this e-letter provides further clarity for those who care for families experiencing transplant.
Conflict of Interest:
None declared