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Children with medical complexity

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https://www.readbyqxmd.com/read/28923429/frequency-of-auditory-involvement-and-of-associated-factors-in-patients-with-juvenile-idiopathic-arthritis
#1
Adriana Ivonne Céspedes Cruz, Myriam Méndez Núñez, Eunice Solís Vallejo, Maritza Zeferino Cruz, Alfonso Ragnar Torres Jiménez, Verónica Ocampo Sánchez, Beatriz Flores Meza, Norma Quintana Ruiz
INTRODUCTION: Juvenile idiopathic arthritis (JIA) is a chronic autoimmune disease characterized by the presence of arthritis in children under 16 years of age for more than 6 weeks in the absence of any other known cause. The extra-articular manifestations, especially in the audiovestibular system, are related to the involvement of the joints of the ossicular chain as a result of the inflammatory process in the synovium. Previous clinical studies in pediatric patients have shown conductive or sensorineural hearing loss...
September 8, 2017: Reumatología Clinica
https://www.readbyqxmd.com/read/28922265/-stuck-in-the-icu-caring-for-children-with-chronic-critical-illness
#2
Carrie M Henderson, Erin P Williams, Miriam C Shapiro, Emily Hahn, Laura Wright-Sexton, Nancy Hutton, Renee D Boss
OBJECTIVE: Neonatal ICUs and PICUs increasingly admit patients with chronic critical illness: children whose medical complexity leads to recurrent and prolonged ICU hospitalizations. We interviewed participants who routinely care for children with chronic critical illness to describe their experiences with ICU care for pediatric chronic critical illness. DESIGN: Semi-structured interviews. Interviews were transcribed and analyzed for themes. SETTING: Stakeholders came from five regions (Seattle, WA; Houston, TX; Jackson, MS; Baltimore, MD; and Philadelphia, PA)...
September 15, 2017: Pediatric Critical Care Medicine
https://www.readbyqxmd.com/read/28917994/use-of-the-masterka-for-complex-nasolacrimal-duct-obstruction-in-children
#3
Lama Khatib, Maryam Nazemzadeh, Karen Revere, William R Katowitz, James A Katowitz
BACKGROUND: The Masterka stent has been recommended solely for treatment of simple distal membranous nasolacrimal duct obstruction (NLDO). The purpose of this study was to evaluate the Masterka stent as a primary treatment in complex forms of NLDO, including bony ductal stenosis and proximal and serial membranous obstruction. METHODS: The medical records of patients who underwent treatment for congenital nasolacrimal duct obstruction with the monocanalicular Masterka stent were reviewed retrospectively...
September 13, 2017: Journal of AAPOS: the Official Publication of the American Association for Pediatric Ophthalmology and Strabismus
https://www.readbyqxmd.com/read/28916293/is-there-ever-a-role-for-the-unilateral-do-not-attempt-resuscitation-order-in-pediatric-care
#4
Jonathan M Marron, Emma Jones, Joanne Wolfe
Care for children as they near the end of life is difficult and very complex. More difficult still are the decisions regarding what interventions are and are not indicated during these trying times. Occasionally, families of children who are nearing the end of life disagree with the assessment of the medical team regarding these interventions. In rare cases, the medical team can be moved to enact a do not attempt resuscitation (DNAR) order against the wishes of the patient's parents. This manuscript presents one such illustrative case and discusses the ethical issues relevant to such challenging clinical scenarios...
September 12, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28915813/the-relationship-between-burden-of-childhood-disease-and-foreign-aid-for-child-health
#5
J Clay Bavinger, Paul Wise, Eran Bendavid
BACKGROUND: We sought to examine the relationship between child specific health aid (CHA) and burden of disease. Based on existing evidence, we hypothesized that foreign aid for child health would not be proportional to burden of disease. METHODS: In order to examine CHA and burden of disease, we obtained estimates of these parameters from established sources. Estimates of disability adjusted life years (DALYs) in children (0-5 years) were obtained from the World Health Organization for 2000 and 2012...
September 15, 2017: BMC Health Services Research
https://www.readbyqxmd.com/read/28915135/otolaryngologic-management-of-down-syndrome-patients-what-is-new
#6
Ethan C Bassett, Mary F Musso
PURPOSE OF REVIEW: The management of children with Down syndrome as it pertains to the otolaryngologist continues to evolve. Obstructive sleep apnea (OSA) has dominated the recent literature, but other topics including hearing loss, swallowing, and perioperative considerations are also reported. RECENT FINDINGS: The prevalence of OSA in children with Down syndrome ranges from 57 to 73% in certain cohorts, and, whereas adentonsillectomy can decrease Apnea-Hypopnea Index, up to 80% may have persistent OSA...
September 14, 2017: Current Opinion in Otolaryngology & Head and Neck Surgery
https://www.readbyqxmd.com/read/28914984/hypercalcemic-disorders-in-children
#7
REVIEW
Victoria J Stokes, Morten F Nielsen, Fadil M Hannan, Rajesh V Thakker
Hypercalcemia is defined as a serum calcium concentration that is greater than 2 standard deviations above the normal mean, which in children may vary with age and sex, reflecting changes in the normal physiology at each developmental stage. Hypercalcemic disorders in children may present with hypotonia, poor feeding, vomiting, constipation, abdominal pain, lethargy, polyuria, dehydration, failure to thrive and seizures. In severe cases renal failure, pancreatitis and reduced consciousness may also occur and older children and adolescents may present with psychiatric symptoms...
September 15, 2017: Journal of Bone and Mineral Research: the Official Journal of the American Society for Bone and Mineral Research
https://www.readbyqxmd.com/read/28912165/holistic-care-of-complicated-tuberculosis-in-healthcare-settings-with-limited-resources
#8
Trevor Duke, Sharon Kasa Tom, Harry Poka, Henry Welch
In recent years, most of the focus on improving the quality of paediatric care in low-income countries has been on improving primary care using the Integrated Management of Childhood Illness, and improving triage and emergency treatment in hospitals aimed at reducing deaths in the first 24 hours. There has been little attention paid to improving the quality of care for children with chronic or complex diseases. Children with complicated forms of tuberculosis (TB), including central nervous system and chronic pulmonary TB, provide examples of acute and chronic multisystem paediatric illnesses that commonly present to district-level and second-level referral hospitals in low-income countries...
September 14, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/28910284/caretakers-perspectives-of-paediatric-tb-and-implications-for-care-seeking-behaviours-in-southern-mozambique
#9
Carolina Mindu, Elisa López-Varela, Yara Alonso-Menendez, Yolanda Mausse, Orvalho Joaquim Augusto, Kizito Gondo, Jose Múñoz, Jahit Sacarlal, Alberto L García-Basteiro, Pedro L Alonso, Khátia Munguambe
BACKGROUND: Tuberculosis (TB) remains an important public health concern, especially in poorly resourced settings. TB diagnosis is challenging, particularly for children, who are the most vulnerable to its' impacts. Lack of knowledge and awareness of the disease compromises prompt diagnosis and treatment compliance. OBJECTIVE: To gain insights regarding caretakers' knowledge of the aetiology and prevention of paediatric TB in southern Mozambique, to describe their care-seeking behaviours and to assess the acceptability of diagnostic procedures...
2017: PloS One
https://www.readbyqxmd.com/read/28899986/perioperative-spending-on-spinal-fusion-for-scoliosis-for-children-with-medical-complexity
#10
Jay G Berry, Michael Glotzbecker, Jonathan Rodean, Izabela Leahy, Joanne Cox, Sara J Singer, Margaret O'Neill, Matt Hall, Lynne Ferrari
BACKGROUND: Global payment is used with surgeries to optimize health, lower costs, and improve quality. We assessed perioperative spending on spinal fusion for scoliosis to inform how this might apply to children. METHODS: Retrospective analysis of 1249 children using Medicaid and aged ≥5 years with a complex chronic condition undergoing spinal fusion in 2013 from 12 states. From perioperative health services measured 6 months before and 3 months after spinal fusion, we simulated a spending reallocation with increased preoperative care and decreased hospital care...
September 12, 2017: Pediatrics
https://www.readbyqxmd.com/read/28893759/values-and-preferences-of-women-living-with-hiv-who-are-pregnant-postpartum-or-considering-pregnancy-on-choice-of-antiretroviral-therapy-during-pregnancy
#11
Lyubov Lytvyn, Reed A Siemieniuk, Sophie Dilmitis, Allyson Ion, Yaping Chang, Malgorzata M Bala, Veena Manja, Reza Mirza, Rene Rodriguez-Gutierrez, Hassan Mir, Laura Banfield, Per Olav Vandvik, Susan Bewley
OBJECTIVE: To investigate women's values and preferences regarding antiretroviral therapy (ART) during pregnancy to inform a BMJ Rapid Recommendation. SETTING: Primary studies reporting patient-reported outcomes relevant to decision-making regarding ART in any clinical and geographical setting. PARTICIPANTS: Women living with HIV who are pregnant, postpartum or considering pregnancy. OUTCOME MEASURES: Quantitative measurements and qualitative descriptions of values and preferences in relation to ART during pregnancy...
September 11, 2017: BMJ Open
https://www.readbyqxmd.com/read/28890157/the-cumulative-burden-of-surviving-childhood-cancer-an-initial-report-from-the-st-jude-lifetime-cohort-study-sjlife
#12
Nickhill Bhakta, Qi Liu, Kirsten K Ness, Malek Baassiri, Hesham Eissa, Frederick Yeo, Wassim Chemaitilly, Matthew J Ehrhardt, Johnnie Bass, Michael W Bishop, Kyla Shelton, Lu Lu, Sujuan Huang, Zhenghong Li, Eric Caron, Jennifer Lanctot, Carrie Howell, Timothy Folse, Vijaya Joshi, Daniel M Green, Daniel A Mulrooney, Gregory T Armstrong, Kevin R Krull, Tara M Brinkman, Raja B Khan, Deo K Srivastava, Melissa M Hudson, Yutaka Yasui, Leslie L Robison
BACKGROUND: Survivors of childhood cancer develop early and severe chronic health conditions (CHCs). A quantitative landscape of morbidity of survivors, however, has not been described. We aimed to describe the cumulative burden of curative cancer therapy in a clinically assessed ageing population of long-term survivors of childhood cancer. METHODS: The St Jude Lifetime Cohort Study (SJLIFE) retrospectively collected data on CHCs in all patients treated for childhood cancer at the St Jude Children's Research Hospital who survived 10 years or longer from initial diagnosis and were 18 years or older as of June 30, 2015...
September 7, 2017: Lancet
https://www.readbyqxmd.com/read/28888814/primary-and-secondary-enuresis-pathophysiology-diagnosis-and-treatment
#13
REVIEW
Bernhard Haid, Serdar Tekgül
CONTEXT: Enuresis is a common and possibly underestimated condition. While 5-10% of school-aged children suffer from the condition, a lack of background knowledge may impede timely child-adapted and successful therapy. OBJECTIVE: To provide a comprehensive overview of the pathophysiology, diagnosis, and treatment of enuresis. EVIDENCE ACQUISITION: Guideline and position papers from the European Society of Pediatric Urology, the European Association of Urology, and the International Children's Continence Society were acquired...
September 6, 2017: European Urology Focus
https://www.readbyqxmd.com/read/28885240/advancing-value-based-population-health-management-through-payer-provider-partnerships-improving-outcomes-for-children-with-complex-conditions
#14
Pamela Peele, Donna Keyser, John Lovelace, Deborah Moss
Population health management (PHM) approaches to improve cost and quality remain limited. To address this gap, stakeholders within an integrated delivery and financing system in Western Pennsylvania designed, implemented, and tested a value-based care model for children with medically complex conditions that could be scaled across the broader pediatric population. The model included: (1) a multilevel, interdisciplinary infrastructure; (2) actionable analytics reports to guide continuous quality improvement; (3) alternative provider payments; (4) consumer-directed spending accounts; and (5) shared savings with practices...
September 1, 2017: Journal for Healthcare Quality: Official Publication of the National Association for Healthcare Quality
https://www.readbyqxmd.com/read/28884903/long-term-follow-up-of-lymphatic-malformations-in-children-treated-with-sildenafil
#15
Joanna H Tu, Elidia Tafoya, Michael Jeng, Joyce M Teng
BACKGROUND/OBJECTIVES: Lymphatic malformations (LMs) are challenging to treat. Reports on the benefits of sildenafil for LM management have been mixed. This study evaluated long-term clinical outcomes of pediatric LM patients after sildenafil treatment. METHODS: A retrospective chart review was performed on pediatric LM patients treated with sildenafil in the past 5 years. Patients were also contacted to complete a survey of comprehensive questions about their LM after sildenafil and subsequent interventions...
September 2017: Pediatric Dermatology
https://www.readbyqxmd.com/read/28870494/health-related-quality-of-life-outcomes-of-a-telehealth-care-coordination-intervention-for-children-with-medical-complexity-a-randomized-controlled-trial
#16
Wendy S Looman, Robyn L Hullsiek, Lyndsay Pryor, Michelle A Mathiason, Stanley M Finkelstein
The purpose of this study was to explore health-related quality of life (HRQL) and family impact in the context of an advanced practice registered nurse-delivered telehealth care coordination intervention for children with medical complexity (CMC). This was a secondary outcomes analysis of a randomized controlled trial with 163 families of CMC in an existing medical home. HRQL and family impact were measured using the PedsQL measurement model. Bivariate and analysis of covariance analyses were conducted to explore associations at baseline and the intervention effect over 2 years...
September 1, 2017: Journal of Pediatric Health Care
https://www.readbyqxmd.com/read/28869067/national-testing-of-the-nursing-kids-intensity-of-care-survey-for-pediatric-long-term-care
#17
Amanda J Hessels, Sharon W Darby, Edwin Simpser, Lisa Saiman, Elaine L Larson
PURPOSE: The purpose of this study is to test the Nursing-Kids Intensity of Care, a measure of the intensity of nursing care needs, defined as the quantity and type of direct and indirect care activities performed by caregivers in a national sample. DESIGN AND METHODS: A 40-item tool previously tested in a small sample was psychometrically tested on a sample of 116 children with complex medical conditions by 33 nurse raters across 11 pediatric sites. RESULTS: The Nursing-Kids Intensity of Care tool demonstrated components of usability, feasibility, inter-rater, test-retest and internal consistency reliability and construct validity in the national study sample...
August 28, 2017: Journal of Pediatric Nursing
https://www.readbyqxmd.com/read/28865558/impact-of-accreditation-on-quality-in-echocardiograms-a-quantitative-approach
#18
Sarina K Behera, Shea N Smith, Theresa A Tacy
BACKGROUND: Accreditation through the Intersocietal Accreditation Commission (IAC) is believed but not proven to increase quality in imaging. The goal of this study was to use quality metrics to evaluate the impact of accreditation on quality in pediatric echocardiography. METHODS: This is a retrospective study comparing quality metrics in 236 pediatric transthoracic echocardiograms in patients with congenital heart disease from (1) California Pacific Medical Center (CPMC), a community hospital, before and after IAC accreditation, and (2) the IAC-accredited Lucile Packard Children's Hospital (LPCH), an academic children's referral center, during equivalent eras...
September 2017: Journal of the American Society of Echocardiography
https://www.readbyqxmd.com/read/28857867/factors-associated-with-stability-of-health-nursing-services-for-children-with-medical-complexity
#19
Savithri Nageswaran, Shannon L Golden
The objectives of our study are to: (1) identify the factors associated with lack of stable home healthcare nursing services for children with medical complexity, and (2) describe the implications of unstable home healthcare nursing for children, caregivers, nurses, and home healthcare agencies. We collected qualitative data in 20 semistructured in-depth interviews (15 English, 5 Spanish) with 26 primary caregivers of children with medical complexity, and 4 focus groups of 18 home healthcare nurses inquiring about their experiences about home healthcare nursing services for children with medical complexity...
September 2017: Home Healthcare Now
https://www.readbyqxmd.com/read/28856823/talking-with-caregivers-of-children-living-in-the-community-with-ventricular-assist-devices
#20
Courtney Petruik, Cheryl Mack, Jennifer Conway, Holger Buchholz, Michael van Manen
A VAD is a mechanical pump used to support the functioning of a failing heart. As a pediatric therapy, a VAD is used as a temporary solution for poor heart function, a bridge to transplantation or recovery, or a destination therapy. The goal of this qualitative study was to explore the perspectives of family and professional caregivers of children who are supported by VADs in outpatient settings. Semi-structured interviews were conducted with 22 caregivers of school-aged children discharged home on VAD support...
August 29, 2017: Pediatric Transplantation
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