Quality of life and subjective well-being of children and caregivers at different stages of allogeneic hematopoietic stem cell transplantation

This paper presents the results of our study of the subjective assessment of patients and their parents of the impact of disease and treatment with hematopoietic stem cell transplantation (HSCT) on the quality of their daily life and feeling of well-being, as well as of individual and family psychological factors associated with the quality of life and well-being. The data obtained from this study are particularly relevant for the development of long-term, comprehensive programs of psychological followup and rehabilitation of patients during and after HSCT. Despite a constant research interest in changes in the quality of life of patients of different ages and diagnoses undergoing HSCT, there are some discrepancies in the reported results and a lack of longitudinal studies where the parameters of interest are measured before transplantation. Here, were report the initial results of our prospective study that evaluated the quality of life and measures of subjective well-being of patients aged 8–18 years with hematological malignancies, immune and blood diseases and their parents during the preparation for transplantation, and then 3–4 weeks, and 3 months after HSCT. The study was approved by the Independent Ethics Committee and the Scientific Council of the Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology and Immunology, Ministry of Healthcare of the Russian Federation.