Educational Needs of the Adolescent Transplant Recipient: A Developmental Approach to Understanding Transplant.

BACKGROUND: As pediatric transplant patients reach adolescence, care teams must prepare them for an eventual transition to adult-oriented care. Care teams must provide patients with the necessary knowledge and skills to manage their medical needs independently, but the level of learning required to successfully self-manage a transplant is substantial. Furthermore, adolescence is also a dynamic developmental period that includes significant cognitive development and changes in social motivations. METHODS: Within this report, we offer insights into some of the key developmental mechanisms of adolescence that may influence their learning in a medical context. We also review key concepts that should be included in patient education across a range of domains. Finally, we consider how patients with comorbid developmental disorders may require tailored education. RESULTS: Key domains for education include (1) personal health history, (2) medication knowledge/adherence, (3) navigation of the healthcare system, and (4) communication with others about their health. Teams should intentionally track patient progress in their education, although few formalized tools are currently available to support tracking. Accommodations to learning for patients with developmental needs include varied instructional modalities (e.g., verbal, written, and modeling), opportunities to practice skills in a controlled manner, and establishment of family/community support that can persist into adulthood. CONCLUSIONS: Education of transplant patients is a critical but long-term process that supports the successful transition to adulthood. Care teams should develop intentional plans to transfer knowledge and build skills across adolescence, while remaining open to adaptive approaches to support the learning of all patients.

Psychosocial outcomes of parents in pediatric haploidentical transplant: parental hematopoietic cell donation as a double-edged sword.

Parents are increasingly used as donors for their child's haploidentical hematopoietic cell transplant, creating a dual role for parents that may increase the stress of caring for their ill child. Empiric research on the psychological adjustment of parental donors is lacking. We conducted a retrospective survey of parents (n = 136) whose child underwent transplant with a parental donor or a matched-unrelated donor, including both donor and nondonors, and both parents of survivors and bereaved. All parents completed standardized measures of quality of life, depression, anxiety, post-traumatic stress, and life satisfaction. Bereaved parents also completed measures of their grief response, while parents of survivors completed measures of the parent-child relationship. The overall sample reported psychological functioning near normative levels, but bereaved parents demonstrated significantly poorer outcomes across all measures. The effect of donor status differed by transplant outcome: for parents of survivors, donors reported better mental health than nondonors, but amongst bereaved parents, donors fared more poorly than nondonors. Bereaved donors reported greater difficulties with grief than nondonors. Results suggest that serving as donor can be a double-edged sword, acting as a protective factor when there is a successful outcome but a significant risk factor when the child does not survive.

"Giving the gift of life twice": Understanding the lived experiences of parent donors and nondonors in pediatric haploidentical hematopoietic cell transplantation.

BACKGROUND: The use of parental donors in pediatric haploidentical hematopoietic cell transplantation is increasing, but research on the psychosocial impact of parental donation is currently limited. OBJECTIVES: As part of a larger study, we conducted a retrospective, qualitative analysis to explore parental perceptions of the donation process and the impact of being a donor (or nondonor) on parents' adjustment and coping with their child's transplant experience. METHODS: Parents/caregivers of children who underwent transplantation with a parental donor or a matched unrelated donor (N = 136) participated in interviews and completed an open-ended questionnaire. RESULTS: Six themes were identified in the data: level of understanding and satisfaction; perception of choice; preparation for donation; perceptions of donation and infusion; benefit finding; and psychological impact of transplantation. Most parents were satisfied with the information they received and reported a good understanding of transplantation and donation procedures. Parents were divided on perspectives of choice, but their responses reflect that the necessity of saving their child's life does not allow for choice. They described considerable effort to prepare for transplantation, physically, emotionally, and logistically. Parents acknowledged the psychological impact while identifying positive outcomes that resulted from their child's transplant journey. CONCLUSIONS: Results highlight the unique experiences of parental donors and nondonors from the anticipation phase to the completion of their child's transplant. Additionally, findings inform supportive care guidance by highlighting the need to assess parental donors' emotional functioning, provide support post donation, and conduct bereavement follow-up.

IL-15: a novel prosurvival signaling pathway in cardiomyocytes.

Cardiovascular disease is the leading cause of death in Western countries. A major limitation of current treatments is the inability to efficiently repair or replace dead myocardium. Recently, stem cell-based therapies have been explored as an avenue to circumvent current therapeutic limitations. Overall, these therapies seem to result in small improvements in the contractile function of the heart. The exact mechanism(s) of action that underlie these improvements remain unknown, and it is believed that paracrine effects play a significant role. Previously, we had reported that an extract derived from bone marrow cells, in the absence of any live cell, contained cardioprotective soluble factors. In this study, we identify IL-15 as a putative cardioprotectant within the bone marrow cells paracrine profile. Using an in vitro culture system, we assessed the ability of IL-15 to protect cardiomyocytes under hypoxic conditions. For the first time, we have identified IL-15 receptors on the surface of cardiomyocytes and delineated the signaling system by which hypoxic cardiomyocytes may be protected from cellular death and rescued from oxidative stress with IL-15 treatment.