Newborn Screening Programs and Sickle Cell Disease: A Public Health Services and Systems Approach.

INTRODUCTION: Despite universal newborn screening (NBS), children in the U.S. continue to experience morbidity and mortality from sickle cell disease and related causes. Recognizing that assessments of public health services and systems can improve public health system performance and ultimately health outcomes, this study examined variations in NBS program activities for sickle cell disease. METHODS: A mixed methods study included (1) a 2009 survey of NBS programs based on ten essential public health services (N=39 states with ten or more sickle cell births over a 3-year period) and (2) key informant interviews in 2011 with 13 states that had sufficient Phase 1 survey scores, black births, and variability in state legislation and geography. Key informants were from 13 NBS programs, 22 sickle cell treatment centers, and ten advocacy organizations. Analyses were conducted in 2009-2014. RESULTS: Considerable variability exists across states in program activities and roles. More programs reported activities oriented to care of individuals-ensuring access to services, coordination, and provider education; fewer reported planning and analysis activities oriented to statewide policy development and system change. Numbers of activities were not related to the number of affected births. In-depth interviews identified opportunities to enhance activities that support statewide comprehensive systems of care. CONCLUSIONS: NBS programs perform important public health roles that complement and enhance clinical services. Nationwide efforts are needed to enable NBS programs to strengthen population-based functions that are essential to ensuring quality of care for the entire population of children and families affected by sickle cell disease.

The MCH navigator: tools for MCH workforce development and lifelong learning.

Maternal and child health (MCH) leadership requires an understanding of MCH populations and systems as well as continuous pursuit of new knowledge and skills. This paper describes the development, structure, and implementation of the MCH Navigator, a web-based portal for ongoing education and training for a diverse MCH workforce. Early development of the portal focused on organizing high quality, free, web-based learning opportunities that support established learning competencies without duplicating existing resources. An academic-practice workgroup developed a conceptual model based on the MCH Leadership Competencies, the Core Competencies for Public Health Professionals, and a structured review of MCH job responsibilities. The workgroup used a multi-step process to cull the hundreds of relevant, but widely scattered, trainings and select those most valuable for the primary target audiences of state and local MCH professionals and programs. The MCH Navigator now features 248 learning opportunities, with additional tools to support their use. Formative assessment findings indicate that the portal is widely used and valued by its primary audiences, and promotes both an individual's professional development and an organizational culture of continuous learning. Professionals in practice and academic settings are using the MCH Navigator for orientation of new staff and advisors, "just in time" training for specific job functions, creating individualized professional development plans, and supplementing course content. To achieve its intended impact and ensure the timeliness and quality of the Navigator's content and functions, the MCH Navigator will need to be sustained through ongoing partnership with state and local MCH professionals and the MCH academic community.

Spirituality and pediatric cancer.

Spiritual beliefs are an important source of comfort and support to many cancer patients and their families, but they may play a particularly large role when the patient is a child. Parents facing a child's serious illness and possible death, and children themselves trying to make sense of illness, suffering, and death, often look beyond the material world for comfort and explanations.

The evolution of fetal and infant mortality review as a public health strategy.

Infant mortality review (IMR), the forerunner of fetal and infant mortality review (FIMR), emerged at the national level in the mid-1980s as a promising method to improve understanding of local factors contributing to infant mortality and to motivate community response. Building on federal efforts to enhance data capacity and early state and local infant mortality case review studies, the federal Maternal and Child Health Bureau (MCHB) initiated its IMR Program in 1988. Key actions taken to refine and diffuse the IMR/FIMR method include forging a public-private partnership between MCHB and the American College of Obstetricians and Gynecologists in 1990 to develop the National Fetal and Infant Mortality Review Program, recruiting prominent leaders to advocate for FIMR, seeding community projects in geographically dispersed states and localities, and routinely reporting best practices information to the field. In concert with the articulation of core public health functions and a growing emphasis on accountability, attention at the national level has turned to promoting and institutionalizing FIMR in state systems. Efforts are underway in states to build on the FIMR model and coordinate multiple maternal and child health-related review programs. Increasingly, FIMR is recognized as a strategy for contributing to implementation of the core public health functions of assessment, policy development, and quality assurance. The recent national evaluation of FIMR sheds new light on the role of FIMR in community and state maternal and child health systems and marks a new phase in the evolution of FIMR.

Assessing capacity and measuring performance in maternal and child health.

OBJECTIVES: To understand the similarities, differences, and relationships between three tools for performance and capacity assessment currently available for Maternal and Child Health (MCH) programs and for state and local health agencies. METHODS: Three tools for performance and capacity assessment currently available for Maternal and Child Health (MCH) programs and for state and local health agencies, the Title V MCH Block Grant Performance and Outcome Measures (Title V "24"), CAST-5, and the National Public Health Performance Standards Program (NPHPSP) were compared using two metrics, a conceptual model of the public health system, and a set of attributes related to the use of the instruments. RESULTS: Both CAST-5 and the NPHPSP are focused on the capacity and key processes (10 Essential Public Health Services) of the public health system, although CAST-5 is intended for capacity assessment and the NPHPSP is intended for performance measurement. The Title V "24" tool is also intended for performance measurement; however, its focus is on the outputs and outcomes of the health system. The Title V "24" tool is the only one of the three that is mandatory, and the only one whose results at the current time can be used to compare across entities. In addition, both the Title V "24" and the NPHPSP include explicit standards, while CAST-5 does not specify explicit standards against which to compare findings. CONCLUSIONS: While there are various tools available to MCH practitioners for capacity assessment and performance measurement, knowing how the tools relate to each other, and their defining characteristics, should lead to more effective and productive use.

Public health workforce development: keeping population health goals in mind.

In the public health field, there is an identified need to develop the public health workforce strategically to meet the needs of a changing public health landscape. The "core competencies" that support the implementation of the core functions of public health must be tied to the mission and goals of the agency or program, and examined in light of the specific population health concerns they are meant to address. CAST-5 is offered as an example of a tool fulfilling this role for state Maternal and Child Health programs.