Pediatrics
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The medical profession is facing an imperative to deliver more patient-centered care, improve quality, and reduce unnecessary costs and waste. With significant unexplained variation in resource use and outcomes, even physicians and health care organizations with "the best" reputations cannot assume they always deliver the best care possible. Going forward, physicians will need to demonstrate professionalism and accountability in a different way: to their peers, to society in general, and to individual patients. ⋯ For patients and families, the model helps ensure that they are likely to receive the current best evidence-based recommendation. Finally, this model aligns with payers' goals of purchasing value-based care, rewarding quality and improvement, and reducing unnecessary variation around current best evidenced-based, effective, and efficient care. In addition, within the profession, the American Board of Pediatrics recognizes participation in a multisite quality improvement network as one of the most rigorous and meaningful approaches for a diplomate to meet practice performance maintenance of certification requirements.
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Cognitive behavioral therapy (CBT) is known to be an effective treatment of adolescents with chronic fatigue syndrome (CFS), but its availability is limited. Fatigue in Teenagers on the Internet (FITNET), an Internet-based CBT program for adolescents with CFS, has been developed as an alternative to face-to-face CBT. Recently, its short-term effectiveness has been proven in a randomized clinical trial. Here we aimed to assess the long-term outcome of CFS in adolescents after FITNET treatment and after usual care. In addition, factors related to recovery at long-term follow-up (LTFU) for adolescents treated with the FITNET program were investigated. ⋯ The short-term effectiveness of Internet-based CBT on adolescent CFS is maintained at LTFU. At LTFU, usual care led to similar recovery rates, although these rates were achieved at a slower pace.
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Previous studies have indicated that febrile children with sickle cell disease (SCD) had a 3% to 5% risk of being bacteremic due to compromised immune function. The introduction of routine penicillin prophylaxis and conjugate vaccines may have lowered the risk of bacteremia. Our goals were to determine the rate of bacteremia among children with SCD per febrile episode and to estimate the safety of outpatient management among these febrile SCD patients. ⋯ Our rate of bacteremia among febrile children with SCD is much lower than previous estimates, and there was no associated morbidity or mortality among the patients managed as outpatients. A well-appearing febrile child with SCD may be managed as an outpatient after blood is obtained for bacterial culture and parenteral antibiotics are administered, provided there are no other reasons for admission and the patient is able to return promptly for worsening condition or for growth of a pathogen from their blood culture.
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There is increasing unmet need for solid organ donation. Alternative donor sources, such as donation after circulatory determination of death (DCDD), are needed. The objective of this study was to examine the impact of DCDD on trends in pediatric organ donation and transplantation. ⋯ From 2001 to 2010, children received more solid organ transplants and fewer children died waiting. Organ recovery from pediatric and adult DCDD donors increased. The number of pediatric recipients of DCDD grafts remains small. Adults primarily receive the direct benefit from pediatric DCDD but other changes in organ allocation have directly benefited children.
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We present a case of a 9-year-old boy with nemaline myopathy and dilated cardiomyopathy. The combination of nemaline myopathy and cardiomyopathy is rare, and this is the first reported case of dilated cardiomyopathy associated with childhood-onset nemaline myopathy. A novel mutation, p. ⋯ An unusual feature of this case was that the patient's cardiac failure developed during early childhood with no delay of gross motor milestones. The use of a β-blocker did not improve his clinical course, and the patient died 6 months after diagnosis of dilated cardiomyopathy. Congenital nonprogressive nemaline myopathy is not necessarily a benign disorder: deterioration can occur early in the course of dilated cardiomyopathy with neuromuscular disease, and careful clinical evaluation is therefore necessary.