1.
Look at the future -perceptions of fertility counseling and decision-making among adolescents and their parents in the context of hematopoietic stem cell transplantation-experience of one major center for pediatric stem cell transplantation
Barnbrock, A., Hamannt, F., Salzmann-Manrique, E., Rohm, T., Lange, S., Bader, P., Jarisch, A.
Frontiers in pediatrics. 2023;11:1249558
Abstract
INTRODUCTION Increasing survival rates after hematopoietic stem cell transplantation (HSCT) in childhood should put focus on improving the quality of life as adults. An essential aspect is fertility and its preservation. In order to take advantage of the possibility of fertility preservation, fertility counseling should be provided to patients and their parents prior to gonadotoxic therapies. METHODS The aim of this survey was to analyze the impact of fertility counseling in pediatric stem cell transplantation in patients and their parents using questionnaires designed for the study questions. Fifty-one parents and 7 adolescent patients were interviewed between February 2019 and October 2021 about the counseling, their perceptions of fertility issues, and the nature of decision- making concerning fertility preservation. The study included patients with malignant (e.g., leukemia, lymphoma, neuroblastoma) and nonmalignant diseases (e.g., thalassemia, sickle cell disease, immunodeficiency) who received counseling on fertility preservation before HSCT based on an in-house standard and analysed the impact for both groups. RESULTS Two-thirds of the study participants were concerned about having children and grandchildren respectively; for half of all respondents, the topic of fertility and fertility preservation proved to be hopeful. Forty percent of the study participants were burdened by the risk of possible fertility limitations after HSCT. Concerns about fertility was particularly significant for parents whose children were advised to undergo fertility preservation. Parents of children <12 years found deciding on appropriate measures more difficult. Parents with children >7 years involved their children in the decision. All study participants agreed that fertility counseling had not negatively affected the parent-child relationship. More than 90% of all study participants were in favor of addressing fertility, its potential limitations and fertility preservation measures before HSCT. There was no significant difference between the malignant and the non-malignant cohort in all study questions. DISCUSSION Overall, the standardized fertility counseling provided in our center of pediatric stem cell transplantation resulted in high satisfaction among patients and their parents. Multiple counseling on infertility risk, including the younger patients in the decision-making and further options after gonadotoxic therapy may increase the satisfaction of the counseled patients and their parents.
2.
Psychophysical effects of an exercise therapy during pediatric stem cell transplantation: a randomized controlled trial
Senn-Malashonak, A., Wallek, S., Schmidt, K., Rosenhagen, A., Vogt, L., Bader, P., Banzer, W.
Bone marrow transplantation. 2019
Abstract
This study evaluates the physical and psychosocial effects of an inpatient exercise program for children and adolescents undergoing hematopoietic stem cell transplantation (HSCT). Participants (n = 70) were randomized to an exercise intervention (IG: resistance, endurance, and flexibility training) or a non-exercise control group (CG: mental and relaxation training). Pre- (prior hospital admission; T0) and post- (day of discharge; T1) measurements included maximal isometric knee extension strength (KES; strain gauge force transducer), hand grip strength (HGS; JAMAR dynamometer), distance walked in 6 min (6MWD; 6-minute walk test), quality of life (QoL; KINDL-R) and medical parameters. Fifty-seven patients (IG: n = 28; 11.0 (5-17) years; CG: n = 29; 12.0 (6-18) years) completed the study. During hospitalization the IG and CG attended on average 3.1 (2-4) or 2.9 (0.3-4) training sessions weekly. KES, 6MWD, and HGS significantly decreased (p < 0.05) in the CG, while there were no changes in the IG. Pre- to post-changes in 6MWD and HGS differed significantly between groups (p < 0.05). QoL declined in both groups (p < 0.05). Our results indicate that a moderate exercise program is feasible and might counteract a treatment-associated decline of physical performance.