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Background Levofloxacin prophylaxis is recommended to prevent gram-negative bloodstream infections (BSIs) in patients with prolonged chemotherapy-induced neutropenia. However, increasing fluoroquinolone resistance may decrease the effectiveness of this approach. Methods We assessed the prevalence of colonization with fluoroquinolone-resistant Enterobacterales (FQRE) among patients admitted for hematopoietic cell transplantation (HCT) from November 2016 to August 2019 and compared the risk of gram-negative BSI between FQRE-colonized and noncolonized patients. All patients received levofloxacin prophylaxis during neutropenia. Stool samples were collected upon admission for HCT and weekly thereafter until recovery from neutropenia, and underwent selective culture for FQRE. All isolates were identified and underwent antimicrobial susceptibility testing by broth microdilution. FQRE isolates also underwent whole-genome sequencing. Results Fifty-four of 234 (23%) patients were colonized with FQRE prior to HCT, including 30 of 119 (25%) allogeneic and 24 of 115 (21%) autologous HCT recipients. Recent antibacterial use was associated with FQRE colonization (P = .048). Ninety-one percent of colonizing FQRE isolates were Escherichia coli and 29% produced extended-spectrum β-lactamases. Seventeen (31%) FQRE-colonized patients developed gram-negative BSI despite levofloxacin prophylaxis, compared to only 2 of 180 (1.1%) patients who were not colonized with FQRE on admission (P Conclusions Nearly one-third of HCT recipients with pretransplant FQRE colonization developed gram-negative BSI while receiving levofloxacin prophylaxis, and infections were typically caused by their colonizing strains. In contrast, levofloxacin prophylaxis was highly effective in patients not initially colonized with FQRE.

The goals of this undertaking were to assess the outcomes of thyroid screening tests and adherence to thyroid screening guidelines across five Down syndrome (DS) specialty clinics in various states. Data related to thyroid screening were collected for 663 individuals across five clinics specializing in the comprehensive care of individuals with DS for a period of 1 year. Of the 663 participants, 47.7% of participants had a TSH and free T4 ordered at their DS specialty clinic visit. Approximately 19.0% (60/316) had a new thyroid disorder diagnosis made. We conclude that a sizable proportion of the patients with DS are not up-to-date on current guidelines when they present to a DS specialty clinic, while adherence to thyroid screening guidelines helps facilitate early diagnoses. Hypothyroidism is prevalent in the population, consistent with reported literature. DS specialty clinics can help patients stay current on screening guidelines.

Obstructive sleep apnea (OSA) occurs frequently in people with Down syndrome (DS) with reported prevalences ranging between 55% and 97%, compared to 1–4% in the neurotypical pediatric population. Sleep studies are often uncomfortable, costly, and poorly tolerated by individuals with DS. The objective of this study was to construct a tool to identify individuals with DS unlikely to have moderate or severe sleep OSA and in whom sleep studies might offer little benefit. An observational, prospective cohort study was performed in an outpatient clinic and overnight sleep study center with 130 DS patients, ages 3–24 years. Exclusion criteria included previous adenoid and/or tonsil removal, a sleep study within the past 6 months, or being treated for apnea with continuous positive airway pressure. This study involved a physical examination/medical history, lateral cephalogram, 3D photograph, validated sleep questionnaires, an overnight polysomnogram, and urine samples. The main outcome measure was the apnea-hypopnea index. Using a Logic Learning Machine, the best model had a cross-validated negative predictive value of 73% for mild obstructive sleep apnea and 90% for moderate or severe obstructive sleep apnea; positive predictive values were 55% and 25%, respectively. The model included variables from survey questions, medication history, anthropometric measurements, vital signs, patient’s age, and physical examination findings. With simple procedures that can be collected at minimal cost, the proposed model could predict which patients with DS were unlikely to have moderate to severe obstructive sleep apnea and thus may not need a diagnostic sleep study.

The main purposes of this undertaking were to determine how often patients with Down syndrome (DS) are screened for celiac disease (CD) across five DS specialty clinics, which symptoms of CD are most often reported to DS specialty providers at these clinics, and, how many individuals were diagnosed with CD by these clinics. This was accomplished by following 663 individuals with DS for 1 year, across five clinics in different states specializing in the comprehensive care of people with DS. Of the 663 participants, 114 individuals were screened for CD at their visit to a DS specialty clinic. Protracted constipation (43.2%) and refractory behavioral problems (23.7%) were symptoms most often reported to DS specialty providers. During the 1 year study period, 13 patients screened positive for CD by serology. Of those, eight underwent duodenal biopsy, and three were diagnosed with CD. We conclude that CD is an important consideration in the comprehensive care of individuals with DS. However, while symptoms are common, diagnoses are infrequent in DS specialty clinics. © 2016 Wiley Periodicals, Inc.

The Down Syndrome Study Group (DSSG) was founded in 2012 as a voluntary, collaborative effort with the goal of supporting evidenced-based health care guidelines for individuals with Down syndrome (DS). Since then, 5 DS specialty clinics have collected prospective, longitudinal data on medical conditions that co-occur with DS. Data were entered by clinical staff or trained designees into the National Down Syndrome Patient Database, which we created using REDCap software. In our pilot year, we enrolled 663 participants across the U.S., ages 36 days to 70 years, from multiple racial and ethnic backgrounds. Here we report: (i) the demographic distribution of participants enrolled, (ii) a detailed account of our database infrastructure, and (iii) lessons learned during our pilot year to assist future researchers with similar goals for other patient populations.

We investigated what added value, if any, a Down syndrome specialty clinic brings to the healthcare needs of children and adolescents with Down syndrome. For this quality improvement study, we performed a retrospective chart review of 105 new patients with Down syndrome, ages 3 and older, seen during the inaugural year of our specialty clinic. We asked how many of our patients were already up-to-date on the healthcare screenings recommended for people with Down syndrome. We further analyzed what tests we ordered, which referrals we suggested, and, ultimately, what new diagnoses of co-occurring medical conditions were made. Only 9.8% of our patients were current on all of the recommended Down syndrome healthcare screenings. Parents came to clinic with a variety of concerns, and after laboratory tests, radiologic studies, and subspecialty referrals, we made many new diagnoses of gastrointestinal conditions (e.g., constipation and celiac disease), seasonal allergies, dermatologic conditions (e.g., xerosis), behavioral diagnoses (e.g., autism spectrum disorder and disruptive behavior not otherwise specified), and clarifications of neurologic conditions. A Down syndrome specialty clinic can identify and address many healthcare needs of children and adolescents with Down syndrome beyond that which is provided in primary care settings.

Objective Clinical guidelines recommend that patients who sustain a minimal trauma fracture (MTF) should receive a bone mineral density (BMD) scan and bisphosphonate (or equivalent) therapy if diagnosed with osteoporosis. A pilot fracture liaison service (FLS) was implemented in regional NSW to improve adherence to the guidelines. Design Prospective cohort study with an historical control. Setting Primary care. Participants Control (n = 47) and cohort (n = 93) groups comprised patients consenting to interview who presented with a MTF to the major referral hospital 4 months before and 12 months after FLS implementation respectively. Main outcome measures Primary outcome measures were the rates of BMD scans and anti-osteoporotic medication initiation/review after MTF. Hospital admission data were also examined to determine death and refracture rates for all patients presenting during the study period with a primary diagnosis of MTF within 3 years of their initial fracture. Results Although there was no improvement in BMD scanning rates, the reported rate of medication initiation/review after fracture was significantly higher (P < 0.05) in the FLS cohort. However, once adjusted for age, this association was not significant (P = 0.086). There was a lower refracture rate during the cohort period (P = 0.013), however, there were significantly more deaths (P = 0.035) within 3 years of initial fracture. When deaths were taken into account via competing risk regression, patients in the cohort period were significantly less likely to refracture than those in the control period (Hazard ratio = 0.576, P = 0.032). Conclusions A rurally based nurse-led FLS was associated with modest improvement after MTF. Consideration should be given to ways to strengthen the model of care to improve outcomes.

Community-based interventions have greater relevance and a greater chance of success and sustainability when the community is collaboratively involved in the research process. Opening Doors: Project Adventure is a research project designed to evaluate the impact of community-based inclusive recreation, using supportive mentoring, on children and youth with disabilities and special health care needs (CYDS). The project has a central goal of engaging CYDS who are members of underrepresented minorities, including those who face linguistic, cultural, and/or financial barriers to participation. In this article we describe the process of working with community partners and the lessons learned in the development and implementation of Project Adventure.

The Down Syndrome Study Group (DSSG) was founded in 2012 as a voluntary, collaborative effort with the goal of supporting evidenced-based health care guidelines for individuals with Down syndrome (DS). Since then, 5 DS specialty clinics have collected prospective, longitudinal data on medical conditions that co-occur with DS. Data were entered by clinical staff or trained designees into the National Down Syndrome Patient Database, which we created using REDCap software. In our pilot year, we enrolled 663 participants across the U.S., ages 36 days to 70 years, from multiple racial and ethnic backgrounds. Here we report: (i) the demographic distribution of participants enrolled, (ii) a detailed account of our database infrastructure, and (iii) lessons learned during our pilot year to assist future researchers with similar goals for other patient populations.

Objectives. The American Academy of Pediatrics recommends a medical home for children with special health care needs (CSHCN). In the Pediatric Al- liance for Coordinated Care (PACC), 6 pediatric practices introduced interventions to operationalize the medical home for CSHCN. The intervention consisted of a des- ignated pediatric nurse practitioner acting as case man- ager, a local parent consultant for each practice, the de- velopment of an individualized health plan for each patient, and continuing medical education for health care professionals. The objectives of this study were 1) to characterize CSHCN in the PACC, 2) to assess parental satisfaction with the PACC intervention, 3) to assess the impact on hospitalizations and emergency department episodes, and 4) to assess the impact on parental work- days lost and children's school days lost for CSHCN before and during the PACC intervention. Methods. A total of 150 CSHCN in 6 pediatric prac- tices in the Boston, Massachusetts, area were studied. Participants were recruited by their pediatricians on the basis of medical/developmental complexity. Physicians completed enrollment information about each child's di- agnosis and severity of condition. Families completed surveys at baseline and follow-up (at 2 years), assessing their experience with health care for their children. Results. A total of 60% of the children had >5 condi- tions, 41% were dependent on medical technology, and 47% were rated by their physician as having a "severe" condition. A total of 117 (78%) families provided data after the intervention. The PACC made care delivery easier, including having the same nurse to talk to (68%), getting letters of medical necessity (67%), getting re- sources (60%), getting telephone calls returned (61%), getting early medical care when the child is sick (61%), communicating with the child's doctor (61%), getting referrals to specialists (61%), getting prescriptions filled (56%), getting appointments (61%), setting goals for the child (52%), understanding the child's medical condition (56%), and relationship with the child's doctor (58%). Families of children who were rated "severe" were most likely to find these aspects of care "much easier" with the help of the pediatric nurse practitioner. Satisfaction with primary care delivery was high at baseline and remained high throughout the study. There was a statistically sig- nificant decrease in parents missing >20 days of work (26% at baseline; 14.1% after PACC) and in hospitaliza- tions (58% at baseline; 43.2% after PACC). The approxi- mate cost per child per year of the intervention was $400. Conclusions. The PACC medical home intervention increases parent satisfaction with pediatric primary care. Those whose needs are most severe seem to benefit most from the intervention. There are some indications of improved health as well as decreased burden of disease with the intervention in place. The PACC model allows a practice to meet many of the goals of serving as a medical home with a relatively small financial investment. Pedi- atrics 2004;113:1507-1516; children with special health care needs, medical home.

Objective: To survey pediatric residents' attitudes toward caring for children with severe disabilities. Design: A cross-sectional survey of residents in a university-affiliated pediatric residency program between October and December 2005. Residents were asked to complete a newly designed, 13-item survey. For each item, participants selected the degree to which they did or did not agree with a statement about disabilities or caring for children with severe disabilities. Results: Fifty-five (43%) of 129 eligible residents participated. Eighty-nine percent felt that caring for children with severe disabilities was as rewarding as caring for other children. Ninety-two percent felt that there is a societal responsibility to care for such children; 98% felt families of children with disabilities love their children as much as other families. Two-thirds (66%) admitted frustration related to caring for children who cannot be cured or function independently, and 71 % questioned the aggressive treatment of such children. Residents in their second and third postgraduate years were more likely to question the aggressive treatment compared with their junior colleagues. Conclusions: Although pediatric residents had positive attitudes toward children with severe disabilities, emotional and moral tensions did arise around their care.