The development and implementation of an interdisciplinary on-line academic course using a life course perspective.

The University of Wisconsin-Madison Pediatric Pulmonary Center (UW PPC) provides interdisciplinary leadership training for graduate students and postgraduate professionals. The training includes a three-credit on-line course entitled Interdisciplinary Care of Children with Special Health Care Needs. This paper describes the course, the content and organization of which was guided by the life course perspective (LCP). The UW PPC team used the LCP to guide course organization, content development, and evaluation approaches. UW PPC trainees took responsibility for content areas, performed literature reviews and reviews of resources, and suggested student activities. Course content was focused on the child with special health care needs (CSHCN) embedded in contextual environments of family, community, culture, and larger social and public policy arenas. The content included three case-study videos that followed a child with cystic fibrosis from birth to age 18. Key concepts of the LCP were woven in throughout the videos and other course materials. Emphasis was on representing development of the individual during critical/sensitive periods and on social determinants of health. At semester's end, qualitative and quantitative student evaluation results were very positive for all areas of the course. The final course paper, organized similarly to course modules, synthesized all aspects of the course. A successful paper included LCP concepts woven throughout to show integration of course content. The LCP provided a useful framework for course organization and content, and served as a lens through which students came to understand the care needs of CSHCN and their families. A course such as this can serve the important goal of educating future maternal child health professionals in using the LCP to understand how multiple determinants of health interact across the life span to produce health outcomes in this population.

Variation in cystic fibrosis newborn screening algorithms in the United States.

RATIONALE: Cystic fibrosis (CF) newborn screening (NBS) algorithms in the United States vary by state. Differences in CF NBS algorithms could potentially affect the detection rate of CF newborns and lead to disparities in CF diagnosis amongst different racial and ethnic groups. OBJECTIVES: Generate a database of CF NBS algorithms in the United States and identify processes that may potentially lead to missed diagnoses or lead to healthcare disparities. METHODS: We sent an online survey to state and regional CF and NBS leaders about the type and threshold of immunoreactive trypsinogen (IRT) cutoff used and methods used for CFTR  gene variant analysis. Follow-up by email and phone was done to ensure a response from every state, clarify responses, and resolve discordances. RESULTS: There is wide variation in the NBS algorithms employed by different states. Approximately half the states use a floating IRT cutoff, and half use a fixed IRT cutoff. CFTR variant analysis also varies widely, with two states analyzing only for the F508del variant and four states incorporating CFTR gene sequencing. The other states use CFTR variant panels ranging from 23 to 365 CFTR variants. CONCLUSIONS: CF NBS algorithms vary widely amongst the different states in the United States, which affects the ability of CF NBS to diagnose newborn infants with CF consistently and uniformly across the country and potentially may miss more infants with CF from minority populations. Our results identify an important area for quality improvement in CF NBS.

Nutritional practices at a glance: spinal muscular atrophy type I nutrition survey findings.

Proactive nutritional management for children with spinal muscular atrophy type I can provide insight into improved spinal muscular atrophy care. This observational study consisted of a nutritional and medical history survey of children with spinal muscular atrophy type I collected in 2009-2011. Forty-four caregiver survey responses were evaluated using descriptive statistics. Average age of spinal muscular atrophy type I subjects was 5 years (5 mo-16 y). The subject cohort was composed of 22 males, 21 females, and 1 unreported. Nutrition support via feeding tube was utilized by 43 of 44 subjects. A majority of respondents reported using elemental or semi-elemental formula for subjects' essential caloric intake (34 of 44). Formula intolerance issues were reported by many caregivers (27 of 44). Half of caregivers implemented dietary changes on their own or with guidance from other families; 15 caregivers consulted a registered dietitian. Survey responses and comments indicate need for evidence-based nutritional guidelines for spinal muscular atrophy.