Delayed or Forgone Care Among Children With Special Health Care Needs: An Analysis of the 2001 National Survey of Children With Special Health Care Needs

Objective.—To examine the associations of sociodemographic characteristics with both the prevalence and the causes of delayed or forgone care in a nationally representative sample of children with special health care needs.

Methods.—Data were abstracted from the 2001 National Survey of Children with Special Health Care Needs. The families of children with special health care needs (CSHCN) who reported delayed or forgone care were asked about the reasons. The 12 reasons in the questionnaire were grouped into 5 categories. Bivariate and multivariate logistic regression analyses were conducted in SUDAAN to examine the relationship between sociodemographic characteristics of CSHCN and the incidence of delayed or forgone care by its reasons.

Results.—Nearly 10% of CSHCN had experienced delayed or forgone health care in the past 12 months in 2001. Logistic regression showed that delayed or forgone care was more likely to be reported by the families of CSHCN who were adolescents, who had more severe limitations, lived in the South or West, lacked medical insurance, and who lived in families under or near the federal poverty line. Hispanics were more likely to report “lack of medical specialty” and “had language, communication, or cultural problems with provider.” Both Hispanics and non-Hispanic others were twice as likely to report “provider not accessible” as reasons for the delayed or forgone care compared with non-Hispanic whites or blacks.

Conclusion.—CSHCN with certain socioeconomic status and sociodemographic characteristics, as well as those with severe limitations in activity, were more likely to be affected by circumstances that result in delayed or forgone care.

KEY WORDS:  children with special health care needs , delayed care , demographics , forgone care , socioeconomic status