Objectives. To evaluate the feasibility of implementing a statewide children with special health care needs (CSHCN) program evaluation, case management, and surveillance system using a standardized instrument and protocol that operationalized the United States Health and Human Services CSHCN National Performance Measures. Methods. Public health nurses in local public health agencies in Washington State jointly developed and implemented the standardized system. The instrument was the Omaha System. Descriptive statistics were used for the analysis of standardized data. Results. From the sample of CSHCN visit reports (n = 127), 314 problems and 853 interventions were documented. The most common problem identified was growth and development followed by health care supervision, communication with community resources, caretaking/parenting, income, neglect, and abuse. The most common intervention category was surveillance (60%), followed by case management (24%) and teaching, guidance, and counseling (16%). On average, there were 2.7 interventions per problem and 6.7 interventions per visit. Conclusions. This study demonstrates the feasibility of an approach for statewide CSHCN program evaluation, case management, and surveillance system. Knowledge, behavior, and status ratings suggest that there are critical unmet needs in the Washington State CSHCN population for six major problems.

Adequacy of nutrient intakes of adolescents with and without phenylketonuria (PKU) and infants and children with and without maple syrup urine disease (MSUD) were assessed using 3-day diet records sorted by disease and by age of the subject. Mean intakes of all nutrients were greater than two-thirds of the Recommended Dietary Allowances (RDA) or Estimated Safe and Adequate Daily Dietary Intakes (ESADDI) for all adolescents studied, with the exception of selenium (Se) in PKU adolescents, which averaged 27.8 micrograms. For adolescents with PKU, > 50% of the RDA or ESADDI for all nutrients was provided by elemental or modified protein hydrolysate medical foods, except for vitamin A in children aged 11-15 years and Se in children 11-18 years. Mean nutrient intakes of all infants and children were greater than two-thirds of the RDA or ESADDI for all nutrients except Se in MSUD children aged 1-11 years, where intakes ranged from 6.4 to 13.2 micrograms (21-66% of the RDA). The medical foods provided for most of the RDA and ESADDI recommendations, with the exception of Se in MSUD children.

State-level data from the NS-CSHCN are a rich source of information for driving improvements in systems of care, facilitating state and local program planning efforts, writing grants, and completing MCH Five Year Needs Assessment activities.

No abstract