A brief report of caregiver needs and resource utilization during pediatric hematopoietic stem cell transplantation.

Hematopoietic stem cell transplantation (HSCT) is used to eradicate disease and restore normal hematopoietic, immunologic, and/or metabolic functioning. HSCT is a complex treatment that is physiologically and psychologically demanding on the recipient, caregiver, and family. The purpose of this study was to identify needs and resources of family caregivers of pediatric HSCT recipients during the first year after transplant.

Neurodevelopmental outcomes of congenital diaphragmatic hernia survivors followed in a multidisciplinary clinic at ages 1 and 3.

Purpose: Infants who survive congenital diaphragmatic hernia (CDH) repair may have ongoing medical and neurodevelopmental morbidity after hospital discharge. We evaluated the relationship between medical and neurodevelopmental outcomes of CDH survivors seen in a multidisciplinary clinic at ages 1 and/or 3.

Methods: From January 1997 to December 2004, 69 (61%) of 112 CDH survivors were followed in our CDH clinic at ages 1 and/or 3.

Impact on family of survivors of congenital diaphragmatic hernia repair: a pilot study.

Background/purpose: We hypothesized that long-term impact on the family of survivors of congenital diaphragmatic hernia (CDH) would vary based on the child's current clinical problems and clinical severity, family income, insurance, and out-of-pocket expenses.

Methods: Parents of a retrospective cohort of 53 CDH survivors who underwent repair at Children's Hospital Boston in Massachusetts from 1991 through 1999 completed the Impact on Family Scale (IFS), the Child Health Ratings Inventories General Health Module Parent Report, a rating of their child's clinical severity, an inventory of current clinical problems, and family demographics. Statistical tests of the primary outcome, the IFS total score, were performed.

Approaches to neurodevelopmental assessment in congenital diaphragmatic hernia survivors.

Background: Infants with congenital diaphragmatic hernia require complex surgical care and may have neurodevelopmental morbidity. We examined the performance of reports of motor functioning in 25 congenital diaphragmatic hernia survivors using the parent-completed Developmental Profile-II and a clinical evaluation by a neurodevelopmental pediatrician (MD) measured against the Bayley motor scale.

Methods: Bayley motor scores were dichotomized as normal or abnormal.

Long-term functional impact of congenital diaphragmatic hernia repair on children.

Background/purpose: Congenital diaphragmatic hernia (CDH) is a malformation requiring neonatal surgical repair with in-hospital survival rates above 90%. We examined the long-term functional impact of CDH repair on a cross-sectional cohort of survivors.

Methods: A cohort of 53 CDH families participated in this study.

Telling children and adolescents about their cancer diagnosis: Cross-cultural comparisons between pediatric oncologists in the US and Japan.

Purpose: Over the last 50 years, direct communication about cancer with adults has shifted from an approach of not telling to one of telling. Less is known about communication practices with children. The purpose of this study is to (1) describe patterns of communication at diagnosis between pediatric oncologists and children with cancer and (2) compare cultural differences in these practices in the US and Japan.