Quality of life and behavioral adjustment after pediatric bone marrow transplantation

Abstract

Summary:The purpose of this study was two-fold: to describe the quality of life and behavioral adjustment of survivors of pediatric bone marrow transplantation (BMT) prior to and 6 months post-BMT; and, to identify correlates of survivors' quality of life and behavioral adjustment. Participants were 26 children and adolescents who underwent BMT, and their mothers. At pre-and 6 months post BMT, mothers completed standardized measures of their children's behavioral adjustment, quality of life, and adaptive functioning. Self-report questionnaires were completed to determine levels of maternal anxiety and depression, and family functioning. Information was also gathered about demographic variables, medical history, and symptom severity. Children's overall quality of life improved 6 months post BMT and was most strongly associated with pre-BMT levels of family cohesion. Children's behavioral adjustment remained within the normal range across time and was associated with pre-BMT levels of family cohesion and child adaptive functioning. Mothers' psychological adjustment improved over time and was associated with quality of life, but unrelated to children's behavioral adjustment. Pre-BMT levels of family cohesion and child adaptive functioning appear to be important in understanding quality of life and behavioral adjustment of pediatric BMT survivors. Bone Marrow Transplantation (2000) 26, 427-435. Keywords: quality of life; behavioral adjustment; pediatric bone marrow transplantation Bone marrow transplantation (BMT) is an aggressive medical procedure associated with high mortality and morbidity rates. For children and adolescents with some life-threatening pediatric cancers, blood diseases, and metabolic disorders, BMT may represent the best or the only viable treatment option after disease relapse and failure of more conventional treatments. Although the medical efficacy of BMT has been established for certain populations, research on the quality of life and psychosocial effects of this procedure lags behind. Many children undergoing BMT have already endured years of aggressive treatment for a lifethreatening illness. These children and their families face a future that may vary from a cure and normality to chronic graft-versus-host disease, relapse, and/or even death.1 For children and families over-burdened with a wide range of medical, socio-emotional, and financial stresses related to the illness, BMT may represent a severe additional stressor with profound disruption for the entire family. Thus, BMT places each family member at risk for psychological maladjustment and dramatic decrease in quality of life. The purpose of this study was two-fold: to describe the quality of life and behavioral adjustment of survivors of pediatric BMT prior to and 6 months post BMT; and, to identify correlates of quality of life and behavioral adjustment.The BMT procedure and its immediate and late medical effects inevitably have a significant impact on the psychological well-being and quality of life of the child and family. Studie...

Child and parental adaptation to pediatric stem cell transplantation

“…An important predictor of proxy-rated HRQoL was found in the child's demandingness perceived by the parents, assessed before and after admittance for SCT. The low post-SCT HRQoL ratings we found are in contrast with results reported in several other studies [6,15,28] in which an improved HRQoL was found after 6 months or more. One explanation for this difference could be the number of assessments done in some of these studies [15,34].…”

“…Research has shown that parents of children undergoing SCT can suffer from posttraumatic stress symptoms [25,27], depression [6,26], distress [35,39], and anxiety [6,25]. Maternal post-SCT anxiety and depression scores have been found to correlate with their children's QoL ratings at 6 months post-SCT [6]. It has been suggested that maternal psychological problems could be a result of their children's ongoing medical problems and subsequent reduced QoL [6].…”

“…The lengthy hospitalization in isolation, the physical discomfort, the uncertainty about the outcome, and the fear of death are stressors associated with this treatment [3335]. Outcomes may vary from cure (and normality) to chronic graft-versushost disease (GVHD), relapse, or even death [6,15]. Many SCT survivors report long-term physical sequelae like fatigue [29], growth retardation and impaired pubertal development [5,28], pain [20,28], liver complications, and decreased lung functioning [38].…”

“…However, an extensive review of studies involving pediatric patients [43] showed that the majority of both children and their parents indicated an improved HRQoL with time [6], rated the child's HRQoL as "good" post-SCT [19,20,28], or even reported a high quality of life (QoL) post-SCT [3,30]. The reported high HRQoL scores in these studies could be explained in terms of "response shift": as a result of health changes, an individual may undergo changes in internal standards, values, or conceptualization of HRQoL [37].…”

“…Parent-child agreement seems to be influenced by the child's age with older age predicting greater differences, health status (a higher agreement has been found between parents and chronically sick children than between parents and healthy children), the types of the HRQoL domains investigated (i.e., a higher agreement for physical aspects of health versus emotional aspects) [12,14], parental QoL [17], and maternal affective disturbances [6,13]. To our knowledge, the influence of parenting stress on proxy-rated HRQoL has not been studied so far.…”