Medicine and Health Sciences Commons^™

Barriers To The Diagnosis, Care, And Management Of Pediatric Patients With Ehlers-Danlos Syndrome In The United States: A Qualitative Analysis., William R. Black, Lora L. Black, Jordan T. Jones

Manuscripts, Articles, Book Chapters and Other Papers

Objectives: Ehlers-Danlos Syndromes (EDS) are a family of heritable connective tissue diseases. Primary practitioners are capable of diagnosing and managing EDS; however, few are knowledgeable and comfortable enough to see patients with EDS, resulting in delays in diagnosis and care. This study explores the barriers physicians experience with diagnosing, managing, and caring for patients with EDS, and potential resolutions to those barriers. Methods: As part of a larger online study, providers (n = 107) in the United States were asked to specify "What information would improve (their) comfort" in diagnosing, caring for, and managing EDS via open-ended questions. Results …

The Building Healthy Eating And Self-Esteem Together For University Students Mobile App To Treat Eating Disorders: User-Centered Research Design And Feasibility Study., Kelsie T. Forbush, Kara A. Christensen Pacella, Marianna L. Thomeczek, Sara R. Gould, Danielle A N Chapa, Brianne N. Richson, Victoria L. Perko, Joseph Ayres, Yiyang Chen, Sonakshi Negi

Manuscripts, Articles, Book Chapters and Other Papers

BACKGROUND: University students are an at-risk group for the development of eating disorders (EDs); however, many college campuses lack sufficient resources to provide ED specialty care. Students report unique reasons for not seeking ED treatment, including the desire to solve the problem on their own (eg, seeking help from friends, self-medicating, or waiting to see if their problems improve), inability to afford treatment, lack of time to participate in the treatment, fear of seeing their primary care physician, and lack of recognition of their issues as an ED. Mobile health (mHealth) apps may be a cost-effective, helpful adjunctive tool to …

Assessment And Treatment Of Down Syndrome-Associated Arthritis: A Survey Of Pediatric Rheumatologists., Anna Nicek, Nasreen Talib, Daniel Lovell, Chelsey Smith, Mara L. Becker, Jordan T. Jones

Manuscripts, Articles, Book Chapters and Other Papers

Background: Inflammatory arthritis in children with Down syndrome (DS) was first described in 1984 and is now termed Down syndrome-associated arthritis (DA). Studies have shown that DA is under-recognized with a 19-month average delay in diagnosis. Additionally, most patients present with polyarticular, rheumatoid factor (RF) and anti-nuclear antibody (ANA) negative disease. Current therapies for juvenile idiopathic arthritis (JIA) have been used, but appear to be poorly tolerated, more toxic and less effective in patients with DA. There is currently no standardized approach to the assessment or management of DA. The objective of this study was to describe provider perspectives toward …

Toward Actionable Practice Parameters For "Dual Diagnosis": Principles Of Assessment And Management For Co-Occurring Psychiatric And Intellectual/Developmental Disability., John N. Constantino, Shae Strom, Michael Bunis, Cy Nadler, Teresa Rodgers, Julia Lepage, Connie Cahalan, Amber Stockreef, Lucas Evans, Rachel Jones, Alyssa Wilson

Manuscripts, Articles, Book Chapters and Other Papers

PURPOSE OF REVIEW: Although treatment algorithms and parameters for best practice are readily available for all major syndromes of psychiatric impairment, the occurrence of psychiatric syndromes in individuals with intellectual and developmental disability (IDD) invokes serious contextual challenges for interpretation of symptoms, diagnosis, and optimization of treatment, both for clinicians and for the service sectors in which care and support of individuals with IDD are delivered. Recognizing that there exist very few definitive resources for best practice under the circumstance of this form of "dual diagnosis," the Missouri Department of Mental Health convened an expert panel to conduct a focused …

Consensus Treatment Plans For Chronic Nonbacterial Osteomyelitis Refractory To Nonsteroidal Antiinflammatory Drugs And/Or With Active Spinal Lesions., Yongdong Zhao, Eveline Y. Wu, Melissa S. Oliver, Ashley M. Cooper, Matthew L. Basiaga, Sheetal S. Vora, Tzielan C. Lee, Emily Fox, Gil Amarilyo, Sara M. Stern, Jeffrey A. Dvergsten, Kathleen A. Haines, Kelly A. Rouster-Stevens, Karen B. Onel, Julie Cherian, Jonathan S. Hausmann, Paivi Miettunen, Tania Cellucci, Farzana Nuruzzaman, Angela Taneja, Karyl S. Barron, Matthew C. Hollander, Sivia K. Lapidus, Suzanne C. Li, Seza Ozen, Hermann Girschick, Ronald M. Laxer, Fatma Dedeoglu, Christian M. Hedrich, Polly J. Ferguson, Chronic Nonbacterial Osteomyelitis/Chronic Recurrent Multifocal Osteomyelitis Study Group And The Childhood Arthritis And Rheumatology Research Alliance Scleroderma, Vasculitis, Autoinflammatory And Rare Diseases Subcommittee

Manuscripts, Articles, Book Chapters and Other Papers

OBJECTIVE: To develop standardized treatment regimens for chronic nonbacterial osteomyelitis (CNO), also known as chronic recurrent multifocal osteomyelitis (CRMO), to enable comparative effectiveness treatment studies.

METHODS: Virtual and face-to-face discussions and meetings were held within the CNO/CRMO subgroup of the Childhood Arthritis and Rheumatology Research Alliance (CARRA). A literature search was conducted, and CARRA membership was surveyed to evaluate available treatment data and identify current treatment practices. Nominal group technique was used to achieve consensus on treatment plans for CNO refractory to nonsteroidal antiinflammatory drug (NSAID) monotherapy and/or with active spinal lesions.

RESULTS: Three consensus treatment plans (CTPs) were developed …

2016 Sosort Guidelines: Orthopaedic And Rehabilitation Treatment Of Idiopathic Scoliosis During Growth., Stefano Negrini, Sabrina Donzelli, Angelo Gabriele Aulisa, Dariusz Czaprowski, Sanja Schreiber, Jean Claude De Mauroy, Helmut Diers, Theodoros B. Grivas, Patrick Knott, Tomasz Kotwicki, Andrea Lebel, Cindy Marti, Toru Maruyama, Joe O'Brien, Nigel Price, Eric Parent, Manuel Rigo, Michele Romano, Luke Stikeleather, James Wynne, Fabio Zaina

Manuscripts, Articles, Book Chapters and Other Papers

Background: The International Scientific Society on Scoliosis Orthopaedic and Rehabilitation Treatment (SOSORT) produced its first guidelines in 2005 and renewed them in 2011. Recently published high-quality clinical trials on the effect of conservative treatment approaches (braces and exercises) for idiopathic scoliosis prompted us to update the last guidelines' version. The objective was to align the guidelines with the new scientific evidence to assure faster knowledge transfer into clinical practice of conservative treatment for idiopathic scoliosis (CTIS).

Methods: Physicians, researchers and allied health practitioners working in the area of CTIS were involved in the development of the 2016 guidelines. Multiple literature …