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Pediatric Hematopoietic Cell Transplantation: A Longitudinal Assessment of Health-Related Quality of Life of Pediatric Donors
Hou, S. H. J., Stokoe, M., Zwicker, H., Young-Speirs, M., Pelletier, W., Guilcher, G. M. T., Khu, M., Schulte, F. S. M.
Journal of clinical psychology in medical settings. 2023
Abstract
Pediatric donors may be at increased risk of psychological and social challenges following hematopoietic cell transplantation (HCT). Through a retrospective chart review, we evaluated the health-related quality of life (HRQL) of pediatric donors over time and examined facilitators and barriers to implementing a longitudinal psychosocial assessment. Fifty-one pediatric donors (M = 10.7 years, SD = 3.7) completed an HRQL questionnaire across six time points (T1 to T6) from prior to donation to 2 years after. Change in mean scores was assessed using a linear mixed-effect model for repeated measures design. Facilitators and barriers to implementation were examined. HRQL of pediatric donors improved between T1 and T6 with significant change in physical, emotional, and overall functioning. Facilitators to retention included the support of a clinical coordinator. Barriers to implementation included the absence of infrastructure to maintain contact with pediatric and their families. HRQL of pediatric donors of HCT improved steadily over time. Pattern of results suggests a need to further explore factors that contribute to change across time. Development of a longitudinal standardized assessment protocol that can be prospectively and feasibly implemented is integral to supporting the well-being of this group.
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Psychosocial outcomes of parents in pediatric haploidentical transplant: parental hematopoietic cell donation as a double-edged sword
Aguilera, V., Schaefer, M. R., Parris, K., Long, A., Triplett, B., Phipps, S.
Bone marrow transplantation. 2022
Abstract
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.
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G-CSF treatment of healthy pediatric donors affects their hematopoietic microenvironment through changes in bone marrow plasma cytokines and stromal cells
Aerts-Kaya, F., Kilic, E., Köse, S., Aydin, G., Cagnan, I., Kuskonmaz, B., Uckan-Cetinkaya, D.
Cytokine. 2020;139:155407
Abstract
Although G-CSF mobilized peripheral blood stem cell (PBSC) transplantation is commonly used in adults, bone marrow (BM) is still the preferred stem cell source in pediatric stem cell transplantation. Despite the fact that G-CSF is increasingly being used to enhance the hematopoietic stem/progenitor cell (HSPC) yield in BM transplantation (G-BM), the direct effects of G-CSF on the pediatric BM microenvironment have never been investigated. The BM hematopoietic niche provides the physical space where the HSPCs reside. This BM niche regulates HSPC quiescence and proliferation through direct interactions with other niche cells, including Mesenchymal Stromal Cells (MSCs). These cells have been shown to secrete a wide range of hematopoietic cytokines (CKs) and growth factors (GFs) involved in differentiation, retention and homing of hematopoietic cells. Here, we assessed changes in the BM microenvironment by measuring levels of 48 different CKs and GFs in G-BM and control BM (C-BM) plasma from pediatric donors. In addition, the effect of G-CSF on cell numbers and characteristics of HSPCs and MSCs was assessed. IL-16, SCGF-b, MIP-1b (all >1000 pg/mL) and RANTES (>10.000 pg/mL) were highly expressed in healthy donor pediatric BM plasma. Levels of IL-3, IL-18, GROa, MCP-3 (p<0.05) were increased in G-BM, whereas levels of RANTES (p<0.001) decreased after G-CSF treatment. We found a negative correlation with increasing age for IL2-Ra and LIF (p<0.05). In addition, a concomitant increase in the number of both hematopoietic and fibroblast colony forming units was observed, indicating that G-CSF affects both HSPC and MSC numbers. In conclusion, G-CSF treatment of healthy pediatric donors affects the hematopoietic BM microenvironment by expansion of HSPC and MSC numbers and modifying local CK and GF levels.
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Transplant center practices for psychosocial assessment and management of pediatric hematopoietic stem cell donors
Wiener, L., Hoag, J. A., Pelletier, W., Shah, N. N., Shaw, B. E., Pulsipher, M. A., Bruce, J., Bader, P., Willasch, A. M., Dalissier, A., et al
Bone marrow transplantation. 2019
Abstract
Understanding the potential emotional and psychological risks of pediatric sibling HSC donation is an area of research that remains in its infancy. A cross-sectional survey was distributed electronically to directors at all CIBMTR and EBMT centers to describe current transplant center practices for obtaining assent, preparation for the physical/emotional experiences of donation, and monitoring the post-donation well-being of pediatric donors (<18 years of age). Respondents were 45/91 (49%) and 66/144 (46%) of CIBMTR and EBMT centers, respectively. Although 78% of centers reported having a mechanism in place to ensure donor free assent, centers also reported only limited assessment of psychosocial suitability to manage the emotional risks of donation. More than half of centers reported no psychosocial follow-up assessment post-donation. Few centers have policies in place to address donor psychological needs. Future investigations should include medical and psychosocial outcomes following full integration of comprehensive psychosocial screening and surveillance of pediatric donors.
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Safety of Pediatric Peripheral Blood Stem Cell Harvest in Daycare Setting: An Institutional Experience
Abraham, M. A., Devasia, A. J., George, S. P., George, B., Sebastian, T.
Anesthesia, essays and researches. 2019;13(1):91-96
Abstract
Introduction: Children serving as a donor for their siblings will require anesthesia or sedation. In view of shortage of time and space in operating room setting, peripheral blood stem cell (PBSC) harvest is performed as a daycare procedure. Aim: This study aims to find out whether performing PBSC harvest in hematology blood collection area as a daycare procedure is safe or not. Settings and Design: This secondary analysis included 164 pediatric PBSC harvest (154 pediatric donors, of which 10 had repeat harvesting done) donors, performed under anesthesia, in the Department of Hematology, between January 2009 and June 2017. Materials and Methods: Donors were examined, informed consent was obtained, and adequate premedications were ensured. Induction was intravenous for cooperative donors or inhalational sevoflurane followed by intravenous maintenance infusion using either face mask or a laryngeal mask airway (LMA). During the procedure, vitals are monitored with a noninvasive monitor. Normal hemodynamics were ensured before transferring the children to the ward. Statistical Analysis: Statistical analysis was performed using SPSS 16.0 statistical software. Descriptive statistics and frequencies were used for the data description. Results: A total of 137 donors (median age of 5 years) were induced with sevoflurane and LMA was used in 84 children and face mask in 53. Twenty-seven children cooperated for intravenous induction. Various combinations of propofol, dexmedetomidine, and ketamine were used with respiratory and hemodynamic stability. The median duration of anesthesia was 250 (165-375) min. The recovery from anesthesia was smooth with a median wake-up time of 20 (5-60) min. Conclusion: This retrospective analysis demonstrates that nonoperating room anesthesia for pediatric age group for PBSC harvest can be safely and successfully accomplished outside the operation room setting by a consultant anesthesiologist.
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Health-Related Quality of Life among Pediatric Hematopoietic Stem Cell Donors
Switzer, G. E., Bruce, J., Kiefer, D. M., Kobusingye, H., Drexler, R., Besser, R. M., Confer, D. L., Horowitz, M. M., King, R. J., Shaw, B. E., et al
Journal of Pediatrics. 2016;178:164-170.e1
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Abstract
OBJECTIVES To examine health-related quality of life (HRQoL) among sibling pediatric hematopoietic stem cell donors from predonation through 1 year postdonation, to compare donor-reported HRQoL scores with proxy-reports by parents/guardians and those of healthy norms, and to identify predonation factors (including donor age) potentially associated with postdonation HRQoL, to better understand the physical and psychosocial effects of pediatric hematopoietic stem cell donation. STUDY DESIGN A random sample of 105 pediatric donors from US centers and a parent/guardian were interviewed by telephone predonation and 4 weeks and 1 year postdonation. The interview included sociodemographic, psychosocial, and HRQoL items. A sample of healthy controls matched to donors by age, gender, and race/ethnicity was generated. RESULTS Key findings included (1) approximately 20% of donors at each time point had very poor HRQoL; (2) child self-reported HRQoL was significantly lower than parent proxy-reported HRQoL at all 3 time points and significantly lower than that of norms at predonation and 4 weeks postdonation; and (3) younger children were at particular risk of poor HRQoL. CONCLUSIONS Additional research to identify the specific sources of poorer HRQoL among at-risk donors (eg, the donation experience vs having a chronically ill sibling) and the reasons that parents may be overestimating HRQoL in their donor children is critical and should lead to interventions and policy changes that ensure positive experiences for these minor donors. Copyright Published by Elsevier Inc.