Measuring LEND Core Competencies Using Trainee Follow-Up Surveys.

OBJECTIVES: Measuring the value-added impact of Leadership Education in Neurodevelopmental Disabilities and Related Disorders (LEND) training on trainees' leadership and career trajectories is necessary to understand program efficacy. In the current study, we leveraged an existing ex post facto design to develop and test a new measure of LEND competencies and compare outcomes of LEND trainees and comparison peers. METHODS: We developed the LEND Outcomes Follow-Up Survey using a multi-step, mixed methods process. A series of focus groups and consultations with key stakeholders identified eight important LEND leadership outcomes: (1) interdisciplinary work; (2) advocacy; (3) intersectional approach; (4) systems perspective; (5) life course perspective; (6) leadership; (7) engagement with maternal and child health populations; and (8) research experience. We developed and piloted this novel survey to measure these LEND leadership outcomes. We used data collected from this novel measure and an existing survey that is used nationally by LEND, to compare the outcomes of 43 LEND trainees and 30 comparison peers at two years post completion of LEND training. RESULTS: We found that, compared to comparison peers, LEND trainees: (1) worked with a greater number of disciplines; (2) were more likely to be engaged in advocacy; (3) were more likely to utilize a systems perspective in their work; (4) were more likely to work with maternal and child health populations; and (5) were more likely to have experience conducting research. CONCLUSIONS: Our findings suggested that LEND training improves LEND leadership outcomes at two years post-completion of LEND training.

A model to evaluate interprofessional training effectiveness: feasibility and five-year outcomes of a multi-site prospective cohort study.

OBJECTIVES: Assessing the impact of interdisciplinary training programs is highly desirable and needed. However, there are currently no established methods to prospectively assess long-term outcomes of trainees compared to individuals who did not receive training. Our objective was to test the feasibility of a longitudinal, prospective cohort design to evaluate training outcomes, and to use this method to evaluate Leadership Education in Neurodevelopmental Disabilities and Related Disorders (LEND) training outcomes. METHODS: LEND trainees were matched to comparison peers and followed annually for up to five years using a pre-existing outcomes survey. We assessed study feasibility using recruitment and retention data over five years. We then looked at preliminary efficacy of LEND training in LEND trainees compared to comparison peers using the pre-existing outcomes survey. RESULTS: Overall, 68.3% of eligible trainees participated in the Outcomes Study across five years, and 66.0% were matched to comparison peers. On average, 84.4% of LEND trainees and 79.9% of comparison peers completed the outcomes survey annually. Attrition was low at 0.9% for LEND trainees and 2.6% for comparison peers over five years. LEND training demonstrated preliminary efficacy in promoting leadership development: LEND trainees began their careers engaged in more leadership activities than comparison peers, and the rate of growth in their participation in leadership activities was greater. CONCLUSIONS: The design used to assess outcomes is a feasible approach that can be widely used to assess training program outcomes. Analyses suggest that LEND training is efficacious in increasing involvement in leadership activities over time after graduation.

Cross-Sectional Survey on Newborn Screening in Wisconsin Amish and Mennonite Communities.

Old Order Amish and Mennonites, or Plain populations, are a growing minority in North America with unique health care delivery and access challenges coupled with higher frequencies of genetic disorders. The objective of this study was to determine newborn screening use and attitudes from western Wisconsin Plain communities. A cross-sectional survey, with an overall response rate of 25 %, provided data representing 2010 children. In households with children (n = 297), the rate of newborn screening was 74 % and all children were screened in 40 % of these households. Lack of access to testing was the most common reason for not screening all children and parental age was inversely associated with testing. The majority of respondents reported some or more knowledge of screening, viewed screening as important, and had access to screening in their communities. Households with children who had never received newborn screening (26 %) reported lower frequencies of favorable responses in all categories compared to households that had at least one child screened. The difference in access to newborn screening was less marked between the groups compared to differences on knowledge and consideration of its importance. Moreover, 55 % of households who had never screened any of their children reported being unlikely or unsure of screening any future children. A focus on improving access to newborn screening alongside establishing approaches to change parental perceptions on the importance of newborn screening is necessary for increasing newborn screening in these Plain communities.