Since 2000, the Children with Special Health Care Needs (CSHCN) Screener (CS) has been widely used nationally, by states, and locally as a standardized and brief survey-based method to identify populations of children who experience chronic physical, mental, behavioral, or other conditions and who also require types and amounts of health and related services beyond those routinely used by children. Common questions about the CS include those related to its development and uses; its conceptual framework and potential for under- or overidentification; its ability to stratify CSHCN by complexity of service needs and daily life impacts; and its potential application in clinical settings and comparisons with other identification approaches. This review recaps the development, design, and findings from the use of the CS and synthesizes findings from studies conducted over the past 13 years as well as updated findings on the CS to briefly address the 12 most common questions asked about this tool through technical assistance provided regarding the CS since 2001. Across a range of analyses, the CS consistently identifies a subset of children with chronic conditions who need or use more than a routine type or amount of medical- and health-related services and who share common needs for health care, including care coordination, access to specialized and community-based services, and enhanced family engagement. Scoring algorithms exist to stratify CSHCN by complexity of needs and higher costs of care. Combining CS data with clinical diagnostic code algorithms may enhance capacity to further identify meaningful subgroups. Clinical application is most suited for identifying and characterizing populations of patients and assessing quality and system improvement impacts for children with a broad range of chronic conditions. Other clinical applications require further implementation research. Use of the CS in clinical settings is limited because integration of standardized patient-reported health information is not yet common practice in most settings or in electronic health records. The CS continues to demonstrate validity as a non-condition-specific, population-based tool that addresses many of the limits of condition or diagnosis checklists, including the relatively low prevalence of many individual conditions and substantial within-diagnosis variations and across-diagnoses similarities in health service needs, functioning, and quality of care.

To provide a national, population-based assessment of the quality of the health care system for children and youth with special health care needs using a framework of six health care system quality indicators. 49,242 interviews with parents of children with special health care needs from the 2009-10 National Survey of Children with Special Health Care Needs (NS-CSHCN) were examined to determine the extent to which CSHCN had access to six quality indicators of a well-functioning system of services. Criteria for determining access to each indicator were established and applied to the survey data to estimate the proportion of CSHCN meeting each quality indicator by socio-demographic status and functional limitations. 17.6% of CSHCN received care consistent with all six quality indicators. Results for each component of the system quality framework ranged from a high of 70.3% of parents reporting that they shared decision-making with healthcare providers to a low of 40% of parents reporting receipt of services needed for transition to adult health care. Attainment rates were lower for CSHCN of minority racial and ethnic groups, those residing in households where English was not the primary language, those in lower income households, and those most impacted by their health condition. Only a small proportion of CSHCN receive all identified attributes of a high-quality system of services. Moreover, significant disparities exist whereby those most impacted by their conditions and those in traditionally disadvantaged groups are served least well by the current system. A small proportion of CSHCN appear to remain essentially outside of the system, having met few if any of the elements studied.

Objective

The goal of this study was to examine the effects of a new model for well-child care (WCC), the Parent-focused Redesign for Encounters, Newborns to Toddlers (PARENT), on WCC quality and health care utilization among low-income families.

Methods

PARENT includes 4 elements designed by using a stakeholder-engaged process: (1) a parent coach (ie, health educator) to provide anticipatory guidance, psychosocial screening and referral, and developmental/behavioral guidance and screening at each well-visit; (2) a Web-based tool for previsit screening; (3) an automated text message service to provide periodic, age-specific health messages to families; and (4) a brief, problem-focused encounter with the pediatric clinician. The Promoting Healthy Development Survey-PLUS was used to assess receipt of recommended WCC services at 12 months' postenrollment. Intervention effects were examined by using bivariate analyses.

Results

A total of 251 parents with a child aged ≤12 months were randomized to receive either the control (usual WCC) or the intervention (PARENT); 90% completed the 12-month assessment. Mean child age at enrollment was 4.5 months; 64% had an annual household income less than $20,000. Baseline characteristics for the intervention and control groups were similar. Intervention parents scored higher on all preventive care measures (anticipatory guidance, health information, psychosocial assessment, developmental screening, and parental developmental/behavioral concerns addressed) and experiences of care measures (family-centeredness, helpfulness, and overall rating of care). Fifty-two percent fewer intervention children had ≥2 emergency department visits over the 12-month period. There were no significant differences in WCC or sick visits/urgent care utilization.

Conclusions

A parent coach-led model for WCC may improve the receipt of comprehensive WCC for low-income families, and it may potentially lead to cost savings by reducing emergency department utilization.

Background

Parent-focused Redesign for Encounters, Newborns to Toddlers (PARENT), is a well-child care (WCC) model that has demonstrated effectiveness in improving the receipt of comprehensive WCC services and reducing emergency department utilization for children aged 0 to 3 in low-income communities. PARENT relies on a health educator ("parent coach") to provide WCC services; it utilizes a Web-based previsit prioritization/screening tool (Well-Visit Planner) and an automated text message reminder/education service. We sought to assess intervention feasibility and acceptability among PARENT trial intervention participants.

Methods

Intervention parents completed a survey after a 12-month study period; a 26% random sample of them were invited to participate in a qualitative interview. Interviews were recorded, transcribed, and analyzed using the constant comparative method of qualitative analysis; survey responses were analyzed using bivariate methods.

Results

A total of 115 intervention participants completed the 12-month survey; 30 completed a qualitative interview. Nearly all intervention participants reported meeting with the coach, found her helpful, and would recommend continuing coach-led well visits (97-99%). Parents built trusting relationships with the coach and viewed her as a distinct and important part of their WCC team. They reported that PARENT well visits more efficiently used in-clinic time and were comprehensive and family centered. Most used the Well-Visit Planner (87%), and found it easy to use (94%); a minority completed it at home before the visit (18%). Sixty-two percent reported using the text message service; most reported it as a helpful source of new information and a reinforcement of information discussed during visits.

Conclusions

A parent coach-led intervention for WCC for young children is a model of WCC delivery that is both acceptable and feasible to parents in a low-income urban population.