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Purpose: Recruitment of participants from diverse backgrounds is crucial to the generalizability of genetic research, but has proven challenging. We retrospectively evaluated recruitment methods used for a study on return of genetic results. Methods: The costs of study design, development, and participant enrollment were calculated, and the characteristics of the participants enrolled through the seven recruitment methods were examined. Results: A total of 1118 participants provided consent, a blood sample, and questionnaire data. The estimated cost across recruitment methods ranged from $579 to $1666 per participant and required a large recruitment team. Recruitment methods using flyers and staff networks were the most cost-efficient and resulted in the highest completion rate. Targeted sampling that emphasized the importance of Latino/a participation, utilization of translated materials, and in-person recruitments contributed to enrolling a demographically diverse sample. Conclusions: Although all methods were deployed in the same hospital or neighborhood and shared the same staff, each recruitment method was different in terms of cost and characteristics of the enrolled participants, suggesting the importance of carefully choosing the recruitment methods based on the desired composition of the final study sample. This analysis provides information about the effectiveness and cost of different methods to recruit adults for genetic research.

In The Poetics of Space , Gaston Bachelard1 characterizes the house as “one of the greatest powers of integration for the thoughts, memories and dreams of mankind...Life begins well, it begins enclosed, protected, all warm in the bosom of the house.” As medical students, it was often difficult to feel a sense of belonging as we transitioned between rotations throughout our core clinical year. During this time of frequent change, we felt most at home in the Charles B. Rangel Community Health Center in Harlem (hereafter, "Rangel"), which provides care to a Medicaid-insured, predominantly African American and Hispanic population. As members of the Daniel Noyes Brown Scholars Program, a program within the medical school that seeks to expose students to primary care models and mentors, we were uniquely fortunate to enjoy a longitudinal experience at Rangel, making it a space where we felt safe and connected to the staff and patient community. We hoped to make the space that had become our professional home into an inviting and comfortable medical home for patients and families. When thinking about how best to enhance the medical home model, we thought it might be interesting to examine the physical design of the clinic itself because of our shared interest in narrative medicine and the therapeutic potential of art and architecture.2 Although the field of narrative medicine emphasizes the power of stories and the importance of listening in … Address correspondence to Anoushka A. Sinha, MD, MS, Pediatric Residency Training Program, Columbia University Irving Medical Center, 630 W 168th St, CHN-517, New York, NY 10032. E-mail: as4531{at}cumc.columbia.edu

Medulloblastoma (MB) is the most common high-grade primary brain malignancy in children and accounts for 1% of adult brain tumors. Previous studies have compared survival in pediatric and adult MB from the National Cancer Institute Surveillance Epidemiology and End Results (SEER) database finding no difference. However, diagnostic subgroup analyses are limited. We examined survival in children (age 0–19) and adults (20–79) coded as MB in the 2018 SEER database (2000–2016), using Kaplan Meier analysis, log-rank test and Cox proportional hazard ratios (HR) with 95% confidence intervals (CI).). MB in SEER-18 is defined as ICD-O-3 histology codes 9470–9474 (n=1,728). ICD 9473, supratentorial PNET (sPNET, n=97) is biologically distinct so was analyzed separately. 5-year survival for MB, excluding sPNET, was similar in children (n = 1,091, 75.3%) and adults (n= 488, 79.1%) (HR=0.97, CI: 0.79 – 1.17, p=0.50). Subtype analyses showed no survival difference comparing adults and children with desmoplastic nodular MB (n=222, p=0.09), large cell MB (n=73, p=0.46), or MB NOS (n=1330, p=0.10). In contrast, children with sPNET had improved survival (n=65, 72.3%) compared to adults (n=29, 51.7%) (HR = 2.0, CI: 1.10 – 3.92; p=0.02,). In conclusion, 2018 SEER data for MB continue to show no survival difference between adults and children, suggesting adult patients could appropriately be entered on pediatric MB treatment protocols. Further analyses of the 2018 data are ongoing adjusting for sex, race, and treatment. Comparison of adults and children with MB and sPNET will be re-evaluated using the new 2016 World Health Organization classification.

e14529 Background: Medulloblastoma (MB) is a malignant neuroectodermal tumor accounting for 30% of pediatric and only 1% of adult brain tumors. In previous studies comparing survival in pediatric and adult MB from the National Cancer Institute Surveillance Epidemiology and End Results (SEER) database no difference has been found. However, diagnostic subgroup analyses have been limited. Methods: We examined survival in children (age 0-19) and adults (20-79) coded as MB in the 2018 SEER database (2000-2016). We used Kaplan Meier analysis, log-rank test and Cox proportional hazard ratios (HR) with 95% confidence intervals (CI). MB in SEER-18 is defined as ICD-O-3 histology codes 9470–9474 (n = 1,728). ICD 9473, supratentorial PNET (sPNET, n = 97) is biologically distinct and therefore it was analyzed separately. Results: We found that 5-year survival for MB, excluding sPNET, was similar in children (n = 1,091, 75.3%) and adults (n = 488, 79.1%) (HR = 0.97, CI: 0.79 – 1.17, p = 0.50). Furthermore, subtype analyses showed no survival difference comparing adults and children with desmoplastic nodular MB (n = 222, p = 0.09), large cell MB (n = 73, p = 0.46), or MB NOS (n = 1330, p = 0.10). Yet, children with sPNET had improved 5-year survival (n = 65, 72.3%) compared to adults (n = 29, 51.7%) (HR = 2.0, CI: 1.10 – 3.92; p = 0.02,). These findings indicate that while survival in patients with MB is similar across age groups, children with sPNET have improved outcomes. Conclusions: In summary, 2018 SEER data for MB continue to show no survival difference between adults and children, suggesting adult patients could appropriately be entered on pediatric MB treatment protocols. Further analyses of the 2018 data are ongoing adjusting for sex, race, and treatment (chemotherapy or radiation). For sPNET, the apparent improved outcomes for children merit further detailed investigation and will be re-evaluated using the new 2016 World Health Organization classification.

As health humanities programs grow and thrive across the country, encouraging medical students to read, write, and become more reflective about their professional roles, educators must bring a sense of self-reflexivity to the discipline itself. In the health humanities, novels, patient histories, and pieces of reflective writing are often treated as architectural spaces or "homes" that one can enter and examine. Yet, narrative-based learning in health care settings does not always allow its participants to feel "at home"; when not taught with a critical attention to power and pedagogy, the health humanities can be unsettling and even dangerous. Educators can mitigate these risks by considering not only what they teach but also how they teach it.In this essay, the authors present three pedagogical pillars that educators can use to invite learners to engage more fully, develop critical awareness of medical narratives, and feel "at home" in the health humanities. These pedagogical pillars are narrative humility (an awareness of one's prejudices, expectations, and frames of listening), structural competency (attention to sources of power and privilege), and engaged pedagogy (the protection of students' security and well-being). Incorporating these concepts into pedagogical practices can create safe and productive classroom spaces for all, including those most vulnerable and at risk of being "unhomed" by conventional hierarchies and oppressive social structures. This model then can be translated through a parallel process from classroom to clinic, such that empowered, engaged, and cared-for learners become empowering, engaging, and caring clinicians.

Recruitment of participants from diverse backgrounds is crucial to the generalizability of genetic research, but has proven challenging. We retrospectively evaluated recruitment methods used for a study on return of genetic results.The costs of study design, development, and participant enrollment were calculated, and the characteristics of the participants enrolled through the seven recruitment methods were examined.A total of 1118 participants provided consent, a blood sample, and questionnaire data. The estimated cost across recruitment methods ranged from $579 to $1666 per participant and required a large recruitment team. Recruitment methods using flyers and staff networks were the most cost-efficient and resulted in the highest completion rate. Targeted sampling that emphasized the importance of Latino/a participation, utilization of translated materials, and in-person recruitments contributed to enrolling a demographically diverse sample.Although all methods were deployed in the same hospital or neighborhood and shared the same staff, each recruitment method was different in terms of cost and characteristics of the enrolled participants, suggesting the importance of carefully choosing the recruitment methods based on the desired composition of the final study sample. This analysis provides information about the effectiveness and cost of different methods to recruit adults for genetic research.