Congruence between parents' and adolescents' reports of special health care needs in a Title XXI program

The purpose of this study was to examine agreement between adolescents and their parents about whether or not the adolescent had a special health care need, using the Children with Special Health Care Needs (CSHCN) Screener.

Telephone surveys that included the CSHCN Screener were conducted with 522 adolescents and their parents who were new enrollees in Florida's State Children's Health Insurance Program (SCHIP).

Analyses revealed substantial agreement as to whether or not the adolescent had a chronic condition. However, a full 15% of pairs disagreed. Analyses of pair disagreement revealed that parents reported adolescents' chronic conditions more often than adolescents, most strikingly for mental health conditions. Additional analyses revealed that pairs with older adolescents, female adolescents, and Hispanic origin had higher odds of being congruent than their counterparts.

The results showed higher congruence using the consequence-based CSHCN Screener than is typically reported for diagnosis-based approaches. Despite an impressive rate of agreement, the analyses also highlighted parents' tendency to overreport special health care needs relative to their adolescent, particularly for mental health issues, and illustrated some of the demographic factors that might predict congruence. These findings are relevant to work related to the use of tools such as the CSHCN Screener in profiling enrollees in health care programs that serve children and adolescents.