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

Abstract

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.