Binks JA, Barden WS, Burke TA, Young NL. What do we really know about the transition to
adult-centered health care? A focus on cerebral palsy and spina bifida. OBJECTIVES: To …

The question “what makes a good quality of life?” is a philosophical one which could be
thought immune to scientific investigations. However, over the last few decades there has …

OBJECTIVE: To characterize the quality of life of children with cerebral palsy from the
parents' and children's perspectives. STUDY DESIGN: Ninety-five children were recruited; a …

Objective: To investigate determinants of functional independence and study which
functional abilities were determinants for 'health-related quality of life'in children with …

The psychometric properties of an instrument designed to measure parenting efficacy within
the context of early intervention, the Early Intervention Parenting Self-Efficacy Scale …

Quality of life (QOL) is an important concept for individuals with chronic health conditions.
Measuring and supporting QOL in children, adolescents, and adults with spina bifida (SB) …

Introduction Quality of life was studied in 31 adult survivors of spina bifida, each with Verbal
or Performance IQ score over 70. Methods Instruments measured physical and occupational …

Introduction Despite measures to reduce the incidence of neural tube defects (NTDs), the
rate of decline has not been as dramatic as expected. At least 300,000 newborns worldwide …

Objective Based on social ecological theory, this study was designed to examine the unique
relationships between multi-level ecological factors and psychological symptoms in young …

Myelomeningocele (MMC) is the most complex congenital birth defect compatible with life.
To provide the best health care for children with MMC, clinicians and researchers have to …