Subgroups of parents at higher risk for increased distress during the acute phase of transplant have been identified. These findings can help target parents who may be in greater need of intervention aimed at reducing transplant-related distress.

There has been little empirical documentation of the acute effects of bone marrow or stem cell transplant (BMT) on children. In the present study, the responses of 153 children undergoing BMT were assessed in a prospective, longitudinal design. Children were assessed at the time of admission for transplant, then underwent weekly assessments to week +6, followed by monthly assessment to month +6. Data were obtained both by parent report and patient report (for patients age 5 and up) using the BASES scales. The major findings are: (1) children undergoing BMT enter the hospital with an already heightened level of distress (defined by high levels of somatic symptoms and mood disturbance, and low levels of activity) that increases dramatically following conditioning, reaching a peak approximately 1 week following transplant; (2) this increased distress is transient, declining rapidly back to admission levels by week +4 to week +5, followed by a further decline to presumed basal levels by months 4-6; and (3) the trajectories of distress depicted by both parent and child report are remarkably similar, each providing confirmatory support for the validity of the findings. These findings confirm a number of widely held clinical impressions that had not previously been documented empirically, and point to the need for new interventions or more intensive approaches to supportive care aimed at reducing levels of distress during the acute phase of transplant.

The use of BMTs with or without TBI entails minimal risk of late neurocognitive sequelae in patients who are 6 years of age or older at the time of transplantation. However, patients who are less than 6 years of age at the time of transplantation, and particularly those less than 3 years of age, seem to be at some risk of cognitive declines.

Summary:Medical and demographic variables were examined as predictors of acute health-related quality of life (HRQL), specifically, somatic distress, mood disturbance and activity levels, during the period of bone marrow transplant (BMT) hospitalization, and the transition phase in the months following hospital discharge. The responses of 153 children undergoing BMT were assessed by both parent report and patient self-report in a prospective longitudinal design. Type of transplant, diagnosis, age, gender, and socio-economic status (SES) were examined as predictor variables of patient outcome. Type of transplant, patient age, and SES emerged as significant determinants of patient response. Children undergoing unrelated donor (MUD) transplants experiencing the highest levels of distress, followed by those undergoing matched-sibling BMT, while those undergoing autologous transplant experienced the lowest levels of distress. Younger patients experienced lower levels of distress and better HRQL than older children and adolescents. Although patients from different SES backgrounds appeared very similar at the time of hospital admission, those from lower SES backgrounds demonstrated greater distress and disturbance in HRQL subsequently, and throughout the first 6 months post BMT. These findings help to target specific subgroups of patients that may be in greater need of preventive interventions or more aggressive supportive care. Bone Marrow Transplantation (2002) 29, 435-442. DOI: 10.1038/sj/bmt/1703376 Keywords: bone marrow transplant; children; hospitalization; distress; mood disturbance; quality of life It has been suggested that all of the necessary research regarding patient psychosocial and quality of life outcomes following bone marrow or stem cell transplantation (BMT)

Parents (N = 151) of children undergoing bone marrow or stem cell transplantation (BMT) were assessed in a prospective, longitudinal design with repeated measures of distress (mood disturbance, perceived stress, caregiver burden). Parents were assessed weekly from admission for BMT (week-1) through week +6 post-BMT, followed by monthly assessments through month +6. Concurrent measures of child distress (somatic distress, mood disturbance) were also obtained by parent and child report. Parents demonstrate modest, but significant elevations in distress, particularly during the early period from admission through week +3. Elevations in parental distress are transient, and appear to be largely resolved by 4-6 months post-BMT. Parental distress was unrelated to child age, gender, diagnosis, or type of transplant, but was significantly related to parental socioeconomic status (SES). Parents from lower SES backgrounds reported greater levels of distress throughout the BMT process. Moderate correlations were observed between measures of parent and child distress, and level of child distress at the time of admission for BMT was predictive parental distress trajectories across the acute phase of BMT. These findings point to appropriate targets for intervention to reduce transplant-related distress.