Opportunities, barriers, and recommendations in down syndrome research.

BACKGROUND: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community. OBJECTIVE: The National Down Syndrome Society (NDSS) and the LuMind IDSC Foundation worked together with scientific and medical experts to develop recommendations for the NIH research plan. METHODS: NDSS and LuMind IDSC assembled over 50 experts across multiple disciplines and organized them in eleven working groups focused on specific issues for people with DS. RESULTS: This review article summarizes the research gaps and recommendations that have the potential to improve the health and quality of life for people with DS within the next decade. CONCLUSIONS: This review highlights many of the scientific gaps that exist in DS research. Based on these gaps, a multidisciplinary group of DS experts has made recommendations to advance DS research. This paper may also aid policymakers and the DS community to build a comprehensive national DS research strategy.

Early performance in a humanistic medicine course as a predictor of dental students' later clinical performance.

The purpose of this study was to test the hypothesis that dental students' early ability to demonstrate a humanistic approach with patients is associated with later clinical performance. A first-year humanistic medicine course, Patient Doctor I (PDI), at Harvard School of Dental Medicine combines training in conducting the medical interview with human values, placing a high value on strengthening relationships with patients and emphasizing empowerment, respect, and strong communication skills. Retrospective data were collected in the following domains: PDI course evaluations, admissions information, National Board Dental Examination Parts I and II scores, and Promotions Committee and faculty evaluation scores for hand skills and humanistic and interactive patient-student skills. Planned linear contrasts comparisons were performed for each clinical outcome variable. Tests to support the a priori hypothesis of linear relationships between PDI evaluation ratings and clinical performance, defined as hand skills and humanistic and interactive patient-student skills scores, were significant, both at p=0.03. This study demonstrated the feasibility of measuring dental students' humanistic qualities during the first year. Humanistic qualities (PDI performance) during the first year were found to be associated with clinical performance in the third year of dental school.

Assessing early performance in the patient-doctor relationship in dental education.

In addition to current admissions criteria, the assessment of qualities related to humanistic medicine may help predict clinical and academic performance in dental education. The objective of this feasibility study was to develop and assess the reliability of a coding scheme to quantify and rate qualitative formative narratives describing individual student performance in a medical interview course that utilizes principles of humanistic medicine. A mixed method, using focus groups and individual interviews, was used to develop a coding strategy. Three coders retrospectively rated 209 formative narratives evaluating first-year students at the Harvard School of Dental Medicine to determine high and low performance in this course. Interrater reliability was tested. The focus groups yielded the use of superlatives to identify high performance, with their absence indicating low performance. This study found a high level of calibration among independent coders (Cronbach's alpha 0.75). Twenty-four (11.5 percent) of the narrative evaluations were coded as "high performers" and seven (3.3 percent) as "low performers." The results demonstrate the feasibility of quantifying narrative evaluations to determine high and low performance in a patient-centered course for dental students. It may be that humanistic qualities taught in a patient-centered medical interview course are more significant competencies than previously thought.