The well-being of the health care environment for CSHCN and their families: a latent variable approach.

OBJECTIVE Using structural equation modeling, we sought to assess the system of services for children with special health care needs (CSHCN) and their families by using 14 key indicators of functional abilities of CSHCN, health insurance coverage, access to care, and the impact of their conditions on their families. METHODS With data from the 2001 and 2005-2006 National Surveys of Children With Special Health Care Needs, we used confirmatory factor analysis for ordered-categorical measures to model the relationship between an indirectly observed (ie, latent) variable and the key indicators and evaluate changes in this relationship over time. RESULTS For both survey periods, a single-factor model fit well. The latent construct was defined as the well-being of the health care environment for CSHCN and their families. Family financial problems caused by the child's condition, unmet needs for family support services, and negative impact on employment were most strongly related to the latent well-being construct. The lowest levels of the well-being construct were associated with families that had unmet needs for support services, CSHCN who lacked a usual place for care, and families that spent > or = 11 hours/week providing or coordinating care. CSHCN and their families with family-centered care and with adequate health insurance were likely to have average or better levels of the well-being construct. Mean levels of the well-being construct were unchanged over time. CONCLUSIONS The 14 key indicators can be used to reliably assess a single latent construct. The relative ordering of the indicators' thresholds (a model parameter) may be useful for guiding pediatricians' evaluations of the health care environment for CSHCN and their families. Researchers may use the scores available from the latent-variable model to assess outcomes related to the health care environment and the system of services for CSHCN and their families.