ABSTRACT
There is increasing evidence of the clinical utility of genetic and genomic testing (GT); however, factors influencing personal utility of GT, especially in diverse, multilingual populations, remain unclear. We explored these factors in a diverse cohort of parents/guardians (participants) whose children received clinical GT through the NYCKidSeq program. A total of 847 participants completed surveys at baseline, post-results disclosure, and 6 months (6m) post-results. The largest population groups were Hispanic/Latino(a) (48%), White/European American (24%), and Black/African American (16%). Personal utility was assessed using the Personal Utility (PrU) scale, adapted for pediatric populations and included on the surveys. Three PrU subscales were identified using factor analysis: practical, educational, and parental psychological utility. Overall personal utility summary score and the three subscales significantly decreased after receiving results and over time. Hispanic/Latino(a) participants identified greater overall personal utility than European American and African American participants at all time points (p < 0.001) as did participants whose children received positive/likely positive results compared with those with negative and uncertain results (post-results: p < 0.001 and p < 0.001; 6m post-results: p = 0.002 and p < 0.001, respectively). Post-results, higher subscale scores were associated with lower education levels (practical, parental psychological: p ≤ 0.02) and higher levels of trust in the healthcare system (practical, parental psychological: p ≤ 0.04). These findings help to understand the perspectives of diverse parents/guardians, which is critical to tailoring pre- and post-test counseling across a variety of populations and clinical settings.
Subject(s)
Genetic Testing , Parents , Adolescent , Adult , Child , Female , Humans , Male , Middle Aged , Genomics , Hispanic or Latino/genetics , Multilingualism , Surveys and Questionnaires , White/genetics , Black or African American/geneticsABSTRACT
BACKGROUND: The COVID-19 pandemic forced healthcare institutions and many clinical research programs to adopt telehealth modalities in order to mitigate viral spread. With the expanded use of telehealth, there is the potential to increase access to genomic medicine to medically underserved populations, yet little is known about how best to communicate genomic results via telehealth while also ensuring equitable access. NYCKidSeq, a multi-institutional clinical genomics research program in New York City, launched the TeleKidSeq pilot study to assess alternative forms of genomic communication and telehealth service delivery models with families from medically underserved populations. METHODS: We aim to enroll 496 participants between 0 and 21 years old to receive clinical genome sequencing. These individuals have a neurologic, cardiovascular, and/or immunologic disease. Participants will be English- or Spanish-speaking and predominantly from underrepresented groups who receive care in the New York metropolitan area. Prior to enrollment, participants will be randomized to either genetic counseling via videoconferencing with screen-sharing or genetic counseling via videoconferencing without screen-sharing. Using surveys administered at baseline, results disclosure, and 6-months post-results disclosure, we will evaluate the impact of the use of screen-sharing on participant understanding, satisfaction, and uptake of medical recommendations, as well as the psychological and socioeconomic implications of obtaining genome sequencing. Clinical utility, cost, and diagnostic yield of genome sequencing will also be assessed. DISCUSSION: The TeleKidSeq pilot study will contribute to innovations in communicating genomic test results to diverse populations through telehealth technology. In conjunction with NYCKidSeq, this work will inform best practices for the implementation of genomic medicine in diverse, English- and Spanish-speaking populations.
ABSTRACT
BACKGROUND: Restaurants, particularly independently-owned ones that serve immigrant communities, are important community institutions in the promotion of dietary health. Yet, these restaurants remain under-researched, preventing meaningful collaborations with the public health sector for healthier community food environments. This research aimed to examine levels of acceptability of healthy eating promotion strategies (HEPS) in independently-owned Latin American restaurants (LARs) and identify resource needs for implementing HEPS in LARs. METHODS: We completed semi-structured, online discussions with LAR owners and staff (n = 20), predominantly from New York City (NYC), to examine current engagement, acceptability, potential barriers, and resource needs for the implementation of HEPS. Verbatim transcripts were analyzed independently by two coders using Dedoose, applying sentiment weighting to denote levels of acceptability for identified HEPS (1 = low, 2 = medium/neutral, 3 = high). Content analysis was used to examine factors associated with HEPS levels of acceptability and resource needs, including the influence of the Coronavirus pandemic (COVID-19). RESULTS: The most acceptable HEPS was menu highlights of healthier items (mean rating = 2.8), followed by promotion of healthier items (mean rating = 2.7), increasing healthy offerings (mean rating = 2.6), nutrition information on the menu (mean rating = 2.3), and reduced portions (mean rating = 1.7). Acceptability was associated with factors related to perceived demand, revenue, and logistical constraints. COVID-19 had a mixed influence on HEPS engagement and acceptability. Identified resource needs to engage in HEPS included nutrition knowledge, additional expertise (e.g., design, social media, culinary skills), and assistance with food suppliers and other restaurant operational logistics. Respondents also identified potential policy incentives. CONCLUSIONS: LARs can positively influence eating behaviors but doing so requires balancing public health goals and business profitability. LARs also faced various constraints that require different levels of assistance and resources, underscoring the need for innovative engagement approaches, including incentives, to promote these changes.
Subject(s)
COVID-19 , Restaurants , COVID-19/epidemiology , COVID-19/prevention & control , Diet, Healthy , Humans , Latin America , Surveys and QuestionnairesABSTRACT
ABSTRACT: Healthcare-associated infections are a major public health concern for both patients and medical personnel. This has taken on greater urgency during the current COVID-19 pandemic. Radiation Personal Protective Equipment (RPPE) may contribute to risks of microbial contamination. This possibility was tested in 61 personal or shared-use lead aprons and thyroid collars at Columbia Presbyterian Irving Medical Center. Fifty percent tested positive for either bacterial or fungal contamination, mostly around the neckline of lead vests and thyroid collars. Repeated testing of garments some weeks to months later confirmed continued presence of microbial contamination. The possibility that hospital-approved disinfection agents could degrade the radio-protective features of these garments was also examined. Samples of identical construction to garments in regular use were subjected to either daily or weekly wipes with hypochlorite or alcohol-based hospital-approved cleaning agents for 6 mo. A third group of samples was maintained in contact with the cleaning agents for 6 mo. All samples were fluoroscoped four times during the study. None demonstrated any degradation in radioprotection. All samples were photographed monthly. Physical degradation of the outer plastic covering by concentrated hypochlorite and limited mechanical damage around stitched seams of the samples cleaned daily with alcohol was noted. Based on the high prevalence of microbial contamination, regular cleaning and disinfection protocols should be implemented. Regular cleaning with medical-facility-approved cleaning and disinfecting agents is likely to be effective at reducing the microbial load and unlikely to result in significant reduction in radioprotective properties of these garments.