Objective: In autumn 2012, Massachusetts schools implemented comprehensive competitive food and beverage standards similar to the US Department of Agriculture’s Smart Snacks in School standards. We explored major themes raised by food-service directors (FSD) regarding their school-district-wide implementation of the standards. Design: For this qualitative study, part of a larger mixed-methods study, compliance was measured via direct observation of foods and beverages during school site visits in spring 2013 and 2014, calculated to ascertain the percentage of compliant products available to students. Semi-structured interviews with school FSD conducted in each year were analysed for major implementation themes; those raised by more than two-thirds of participating school districts were explored in relationship to compliance. Setting: Massachusetts school districts (2013: n 26; 2014: n 21). Subjects: Data collected from FSD. Results: Seven major themes were raised by more than two-thirds of participating school districts (range 69–100 %): taking measures for successful transition; communicating with vendors/manufacturers; using tools to identify compliant foods and beverages; receiving support from leadership; grappling with issues not covered by the law; anticipating changes in sales of competitive foods and beverages; and anticipating changes in sales of school meals. Each theme was mentioned by the majority of more-compliant school districts (65–81 %), with themes being raised more frequently after the second year of implementation (range increase 4–14 %). Conclusions: FSD in more-compliant districts were more likely to talk about themes than those in less-compliant districts. Identified themes suggest best-practice recommendations likely useful for school districts implementing the final Smart Snacks in School standards, effective July 2016.
Objective:To assess the perspectives of adults with neurofibromatosis 1 (NF1) regarding cutaneous neurofibroma (cNF) morbidity, treatment options, and acceptable risks-benefits to facilitate the design of patient-centered clinical trials.Methods:An online survey developed by multi-disciplinary experts and patient representatives of the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) cNF working group. The survey was distributed to adults with NF1 (n=3734) in the largest international database of individuals with any form of NF. Eligibility criteria included: self-reported NF1 diagnosis, ≥18 years, ≥1 cNF, and ability to read English.Results:548 adults with NF1 responded to the survey. Respondents ranked appearance, number, and then location as the most bothersome features of raised cNFs. Seventy-five percent of respondents considered a partial decrease of 33-66% in the number or size of cNFs as a meaningful response to experimental treatments. Most respondents (48-58%) were willing to try available cNF treatments but were not aware of options outside of surgical removal. Regarding experimental agents, respondents favored topical then oral medications. Most individuals (>65%) reported being “very much” or “extremely willing” to try experimental treatments, especially those with the highest cNF burden. Many respondents were not willing to tolerate side effects like nausea/vomiting (51%) and rash (46%). The greatest barriers to participation in cNF clinical trials were cost of participation and time off work.Conclusions:Most adults with NF1 are willing to consider experimental therapies for treatment of cNFs. These data will guide the design of patient-centered clinical trials for adults with cNFs.
Objective:Assess imaging utilization practices across clinical specialists in neurofibromatosis type 1 (NF1) for the evaluation of symptomatic and asymptomatic children and adults with or without plexiform neurofibromas (PNs).Methods:An IRB-exempt survey was administered to medical practitioners caring for individuals with NF1 at the Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) meeting, September 2019. The survey included questions on respondent demographic data (9 questions), type of imaging obtained for asymptomatic (4 questions) and symptomatic (4 questions) people with and without PNs, and utilization of diffusion-weighted imaging (DWI, 2 questions).Results:30 practitioners participated in the survey. Most were academic neuro-oncologists at high-volume (>10 patients/week) NF1 centers. 26/30 respondents had access to whole-body (WB)-MRI. The most common approach to an asymptomatic person without PNs was no imaging (adults: 57% (17/30); children: 50% (15/30)), followed by a screening WB-MRI (adults: 20% (6/30); children: 26.7% (8/30)). The most common approach to a person with symptoms or known PNs was regional MRI (adults: 90% (27/30); children: 93% (28/30)), followed by WBMRI (adults: 20% (6/30); children: 36.7% (11/30)). WB-MRI was most often obtained to evaluate a symptomatic child with PNs (37% (11/30)).Conclusions:More than 90% of practitioners indicated they would obtain a regional MRI in a symptomatic patient without known/visible PN. Otherwise, there was little consensus on imaging practices. Given the high prevalence of PNs and risk of malignant conversion in this patient population, there is a need to define imaging-based guidelines for optimal clinical care and the design of future clinical trials.
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