Attitudes of Caregivers to Management of End-Stage Renal Disease in Infants

OBJECTIVES: To characterize the attitudes of pediatric nephrologists caring for infants with end-stage renal disease (ESRD) compared with attitudes from a survey published in 1998. Nephrology nurses and social workers were included. METHODS: An e-mail survey was distributed to pediatric nephrology teams in Canada, Germany, Japan, the United Kingdom, and the United States. RESULTS: Survey responders totaled 270. Renal replacement therapy (RRT) is offered by all nephrologists to some children 1-12 months, and by 98% to some less than 1 month of age (93% in 1998). Of responding nephrologists, 30% offer RRT to all children less than 1 month of age (41% in 1998), and 50%, to all children 1-12 months. Among respondents, 50% indicated that parents can never refuse RRT for children aged 1-12 months, compared with 27% for younger infants. The most influential factor in rejecting RRT for infants was the presence of a co-existing abnormality. Nurses were more likely to believe that parents have the right to refuse RRT for infants. CONCLUSIONS: Attitudes of pediatric nephrologists have changed since 1998. Also, nurses have opinions that are different from those of the nephrologists on some issues, and a consensus should be reached before speaking to families.