Organ toxicity and quality of life after allogeneic bone marrow transplantation in pediatric patients: a single centre retrospective analysis

Abstract

Summary:One hundred and fifty five pediatric patients underwent allogeneic bone marrow transplantation between 1980 and 1996 in the St Anna Children's Hospital in Vienna with an overall survival of 52.3% (81 patients). Seventythree patients with a minimum observation time of 1 year (1-13 years, median: 4.6) were analyzed retrospectively for chronic GVHD, organ toxicity (WHO score), growth and pubertal development. Chronic GVHD was diagnosed in 20 patients (27.3%), being extensive in 17 cases. Maximum organ toxicity was WHO III in two patients (3%) and WHO II in 11 patients (15%) 1 year after BMT and WHO III in one patient (2%) and WHO II in five patients (11%) 3 years after BMT. Impaired growth and pubertal development were detected in more than 30% 3 years after BMT. As all patients presented with a Karnofsky or Lansky score of more than 80%, they were asked to complete a questionnaire comprising 12 questions concerning physical state of health and psychosocial state of health. Restricted contacts were classified as imposing a severe handicap by six patients (8%), restriction in mobility and 'normal life activities' by three patients (4%) and two patients classified themselves as severely physically handicapped. Most patients (75%) reported no physical or psychical impairment.

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].…”

“…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].…”

Quality of life in adults following bone marrow transplantation during childhood

“…These results are in line with previous studies on the long-term effects of having undergone BMT during childhood. 28,29,32 Where work-related functioning was concerned, our patients reported suffering from some illness-related impairment (e.g. working fewer hours per week because of illness-related complaints; only being able to do easy/ light chores due to illness-related impairment; only being able to work continuously for a short period of time or having to take regular breaks).…”

“…Most patients (75%) reported no physical or psychological impairment. 29 Another cross-sectional study revealed that young adults who underwent BMT during childhood reported fewer problems when compared with their healthy peers with respect to interpersonal relationships, sleep, depression, and leisure possibilities, 3-9 years after BMT. 30 On the other hand, they reported more problems with regard to their physical appearance, and their studies and work possibilities.…”