Understanding Barriers to Early Intervention Services for Preterm Infants: Lessons From Two States.

OBJECTIVE: To explore existing barriers and challenges to Early Intervention (EI) referral, enrollment, and service provision for very low birth weight (VLBW; <1500 g) infants. METHODS: We conducted 10 focus groups with parents of VLBW children (n = 44) and 32 interviews with key informants from EI (n = 7), neonatal intensive care units (n = 17), and outpatient clinics (n = 8) at 6 sites in 2 states. We used grounded theory to identify themes about gaps in services. RESULTS: Both parents and providers found EI helpful. However, they also identified gaps in the current EI system at the levels of eligibility, referral, family receptivity, and service provision and coordination with medical care. Inadequate funding and variable procedures for evaluation may affect children's eligibility. Referrals can be missed as a result of simple oversight or communication failure among hospitals, EI, and families; referral outcomes often are not formally tracked. Families may not be receptive to services as a result of wariness of home visits, social stressors, denial about potential developmental delays, or lack of understanding of the benefits of EI. Once a child is deemed eligible, services may be delayed or terminated early, and EI providers may have little specialized training. Communication and coordination with the child's medical care team is often limited. CONCLUSIONS: Systemic barriers, including funding and staffing issues, state and federal regulations, and communication with families and medical providers, have led to gaps in the EI system. The chronic care model may serve as a framework for integrating community-based interventions like EI with medical care for VLBW children and other vulnerable populations.

Improving preterm ophthalmologic care in the era of accountable care organizations.

OBJECTIVES To understand retinopathy of prematurity (ROP) follow-up care for preterm very low-birth-weight infants (VLBW; <1500 g) in the context of the chronic care model and identify opportunities for improvement under accountable care organizations. METHODS We conducted focus groups and interviews with parents (N = 47) of VLBW infants and interviews with neonatal intensive care unit and ophthalmologic providers (N = 28) at 6 sites in Massachusetts and South Carolina. Themes are reported according to consolidated criteria for reporting qualitative research guidelines. RESULTS Respondents perceived that legal liability and low reimbursement contributed to shortages of ROP providers. Some neonatal intensive care units offered subsidies to attract ophthalmologic providers or delayed transfers to institutions that could not provide ROP examinations and/or treatment. Sites used variable practices for coordinating ROP care. Even at sites with a tracking database and a dedicated ROP coordinator, significant time was required to ensure that examinations and treatment occurred as scheduled. Parents' ability to manage their children's health care was limited by parental understanding of ROP, feeling overwhelmed by the infant's care, and unmet needs for resources to address social stressors. CONCLUSIONS Under accountable care organizations, hospitals and ophthalmology practices should share responsibility for ensuring coordinated ROP care to mitigate liability concerns. To promote integrated care, reimbursement for ROP care should be bundled to include screening, diagnosis, treatment, and appropriate follow-up. Clinical information systems should be enhanced to increase efficiency and limit lapses in care. Self-management tools and connections to community resources could help promote families' attendance of follow-up appointments.

Communication of urgent public health messages to urban populations: lessons from the Massachusetts water main break.

OBJECTIVE: To study when and how an urgent public health message about a boil-water order reached an urban population after the Massachusetts water main break. METHODS: In-person surveys were conducted in waiting areas of clinics and emergency departments at a large urban safety net hospital within 1 week of the event. RESULTS: Of 533 respondents, 97% were aware of the order; 34% of those who lived in affected cities or towns were potentially exposed to contaminated water. Among those who were aware, 98% took action. Respondents first received the message through word of mouth (33%), television (25%), cellular telephone calls (20%), landline calls (10%), and other modes of communication (12%). In multivariate analyses, foreign-born respondents and those who lived outside the city of Boston had a higher risk of exposure to contaminated water. New modes (eg, cellular telephones) were used more commonly by females and younger individuals (ages 18 to 34). Individuals who did not speak English at home were more likely to receive the message through their personal networks. CONCLUSIONS: Given the increasing prevalence of cellular telephone use, public officials should encourage residents to register landline and cellular telephone for emergency alerts and must develop creative ways to reach immigrants and non-English-speaking groups quickly via personal networks.

Quality-of-care indicators for children with sickle cell disease.

OBJECTIVE: To develop a set of quality-of-care indicators for the management of children with sickle cell disease (SCD) who are cared for in a variety of settings by addressing the broad spectrum of complications relevant to their illness. METHODS: We used the Rand/University of California Los Angeles appropriateness method, a modified Delphi method, to develop the indicators. The process included a comprehensive literature review with ratings of the evidence and 2 rounds of anonymous ratings by an expert panel (nominated by leaders of various US academic societies and the National Heart, Lung, and Blood Institute). The panelists met face-to-face to discuss each indicator in between the 2 rounds. RESULTS: The panel recommended 41 indicators that cover 18 topics; 17 indicators described routine health care maintenance, 15 described acute or subacute care, and 9 described chronic care. The panel identified 8 indicators most likely to have a large positive effect on improving quality of life and/or health outcomes for children with SCD, which covered 6 topics: timely assessment and treatment of pain and fever; comprehensive planning; penicillin prophylaxis; transfusion; and the transition to adult care. CONCLUSIONS: Children with SCD are at risk for serious morbidities and early mortality, yet efforts to assess and improve the quality of their care have been limited compared with other chronic childhood conditions. This set of 41 indicators can be used to assess quality of care and provide a starting point for quality-improvement efforts.

Can state early intervention programs meet the increased demand of children suspected of having autism spectrum disorders?

OBJECTIVE: To determine whether Early Intervention programs have the capacity to accommodate the expected increase in referrals following the American Academy of Pediatrics' 2007 recommendation for universal screening of 18- and 24-month-old children for Autism Spectrum Disorders (ASD). METHOD: We conducted a telephone survey of all state and territory early. Intervention coordinators about the demand for ASD evaluations, services, and program capacity. We used multivariate models to examine state-level factors associated with the capacity to serve children with ASD. RESULTS: Fifty-two of the 57 coordinators (91%) responded to the survey. Most states reported an increase in demand for ASD-related evaluations (65%) and services (58%) since 2007. In addition, 46% reported that their current capacity poses a challenge to meeting the 45-day time limit for creating the Individualized Family Service Plan. Many states reported that they have shortages of ASD-related personnel, including behavioral therapists (89%), speech-language pathologists (82%), and occupational therapists (79%). Among states that reported the number of service hours (n = 34) 44% indicated that children with ASD receive 5 or fewer weekly service hours. Multivariate models showed that states with a higher percentage of African-American and Latino children were more likely to have provider shortages whereas states with higher population densities were more likely to offer a greater number of service hours. CONCLUSION: Many Early Intervention programs may not have the capability to address the expected increase in demand for ASD services. Early Intervention programs will likely need enhanced resources to provide all children with suspected ASD with appropriate evaluations and services.