Pediatrics
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Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children and adolescents with CF to direct care toward areas that patients regard as important. ⋯ Adolescents and children with CF report a sense of vulnerability, loss of independence and opportunities, isolation, and disempowerment. This reinforces the importance of the current model of multidisciplinary patient-centered care that promotes shared decision-making, control and self-efficacy in treatment management, educational and vocational opportunities, and physical and social functioning, which can lead to optimal treatment, health, and quality of life outcomes.
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Youth ice hockey is an exciting sport with growing participation in the United States. Updated assessment of injury patterns is needed to determine risk factors for severe injury and develop preventive efforts. The purpose of this study was to evaluate our experience as a level 1 pediatric trauma center in Minnesota treating injured youth ice hockey players. ⋯ Youth ice hockey trauma can be severe, necessitating a thorough evaluation of injured children. Injury patterns are influenced by age and gender, providing an opportunity for targeted preventive efforts.
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Recently, a new syndrome of paraganglioma, somatostatinoma, and polycythemia has been discovered (known as Pacak-Zhuang syndrome). This new syndrome, with somatic HIF2A gain-of-function mutations, has never been reported in male patients. We describe a male patient with Pacak-Zhuang syndrome who carries a newly discovered HIF2A mutation. ⋯ This mutation is undoubtedly associated with increased HIF-2α activity and increased protein half-life, because it affects the vicinity of the prolyl hydroxylase target residue, proline 531. To our knowledge, this is the first report describing Pacak-Zhuang syndrome with somatic gain-of-function mutation in HIF2A in a male patient. Congenital polycythemia of unknown origin should raise suspicion for the novel disorder Pacak-Zhuang syndrome, even in male patients.
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Randomized Controlled Trial Multicenter Study
"Greenlight study": a controlled trial of low-literacy, early childhood obesity prevention.
Children who become overweight by age 2 years have significantly greater risks of long-term health problems, and children in low-income communities, where rates of low adult literacy are highest, are at increased risk of developing obesity. The objective of the Greenlight Intervention Study is to assess the effectiveness of a low-literacy, primary-care intervention on the reduction of early childhood obesity. At 4 primary-care pediatric residency training sites across the US, 865 infant-parent dyads were enrolled at the 2-month well-child checkup and are being followed through the 24-month well-child checkup. ⋯ Other outcome measures include observed physician-parent communication, as well as parent-reported information on child dietary intake, physical activity, and injury-prevention behaviors. The study is designed to inform evidence-based standards for early childhood obesity prevention, and more generally to inform optimal approaches for low-literacy messages and health literacy training in primary preventive care. This article describes the conceptual model, study design, intervention content, and baseline characteristics of the study population.
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Observational Study
Pediatric medical complexity algorithm: a new method to stratify children by medical complexity.
The goal of this study was to develop an algorithm based on International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM), codes for classifying children with chronic disease (CD) according to level of medical complexity and to assess the algorithm's sensitivity and specificity. ⋯ PMCA identified children with C-CD (who have accessed tertiary hospital care) with good sensitivity and good to excellent specificity when applied to hospital discharge or Medicaid claims data. PMCA may be useful for targeting resources such as care coordination to children with C-CD.