Follow-up survey of parents of children with major birth defects in New York State.

Abstract

One of the objectives of the New York State birth defect surveillance system, the New York State Congenital Malformations Registry (CMR), is to identify children in need of special programs and assist prevention/intervention programs and services with evaluation. In 1999, the CMR started a statewide mass-mailing program to inform parents of children with major birth defects about programs and support groups that might be helpful to them. A follow-up survey by mail was conducted in 2002 to evaluate the usefulness of the mailing program. The survey was mailed between September and December of 2001 to parents of children born in 2001 and reported to the CMR with selected major birth defects. Non-respondents were followed-up by telephone. Of the 226 eligible families, 54% (122) responded to the survey. Approximately 66% of responding parents stated that the information provided by the mailing program was helpful, and 48% had contacted and/or used the programs and services listed in the information sheets. Parents with children younger than 6 months of age at the time of mailing were more likely to find the information helpful, compared to parents with children 6 months of age or older. The majority of responding parents had contacted and/or used the Early Intervention Program. The findings from the current survey show that the statewide information-mailing program administered by CMR is helpful and useful to the families of children with major birth defects in New York State.