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Feeding Issues and Nutrition
Common gastrointestinal symptoms in pediatric palliative care: nausea, vomiting, anorexia, cachexia.
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Impact of fundoplication versus gastrojejunal feeding tubes on mortality and in preventing aspiration pneumonia in young children with neurologic impairment who have gastroesophageal reflux disease.
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Quality of life of children with neurological impairment who receive a fundoplication for gastroesophageal reflux disease. Srivastava R, Downey EC, Feola P, Samore M, Coburn L, Holubkov R, Mundorff M, Nkoy F, Desrochers D, James BC, Rosenbaum P, Young PC, Dean JM, O'Gorman M. J Hosp Med. 2007 May;2(3):165-73.
Effectiveness of Fundoplication at the Time of Gastrostomy in Infants With Neurological Impairment. Barnhart DC, Hall M, Mahant S, Goldin AB, Berry JG, Faix RG, Dean JM, Srivastava R. JAMA Pediatr. 2013 Oct 1;167(10):911-918.
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Health supervision for children with fragile X syndrome. Hersh JH, Saul RA; Committee on Genetics. Pediatrics. 2011 May;127(5):994-1006. doi: 10.1542/peds.2010-3500. Epub 2011 Apr 25.
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Description of Programs, general statements on children with medical complexity – 2 PDFs
Characteristics of hospitalizations for patients who use a structured clinical care program for children with medical complexity. Berry JG, Agrawal R, Kuo DZ, Cohen E, Risko W, Hall M, Casey P, Gordon J, Srivastava R. J Pediatr. 2011 Aug;159(2):284-90. doi: 10.1016/j.jpeds.2011.02.002. Epub 2011 Mar 22.
Children with medical complexity: an emerging population for clinical and research initiatives. Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, Srivastava R. Pediatrics. 2011 Mar;127(3):529-38. doi: 10.1542/peds.2010-0910. Epub 2011 Feb 21.
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Effect of Programs on Cost or Quality of Care or Descriptions of programs
A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs. Gordon JB, Colby HH, Bartelt T, Jablonski D, Krauthoefer ML, Havens P. Arch Pediatr Adolesc Med. 2007 Oct;161(10):937-44.
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Utilization and costs for children who have special health care needs and are enrolled in a hospital-based comprehensive primary care clinic. Berman S, Rannie M, Moore L, Elias E, Dryer LJ, Jones MD Jr. Pediatrics. 2005 Jun;115(6):e637-42.
Effect of hospital-based comprehensive care clinic on health costs for Medicaid-insured medically complex children. Casey PH, Lyle RE, Bird TM, Robbins JM, Kuo DZ, Brown C, Lal A, Tanios A, Burns K. Arch Pediatr Adolesc Med. 2011 May;165(5):392-8. doi: 10.1001/archpediatrics.2011.5. Epub 2011 Feb 7.
Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study. Adams S, Cohen E, Mahant S, Friedman JN, Macculloch R, Nicholas DB. BMC Pediatr. 2013 Jan 19;13:10. doi: 10.1186/1471-2431-13-10.
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Epidemiology of medically complex illness
Inpatient growth and resource use in 28 children's hospitals: a longitudinal, multi-institutional study. Berry JG, Hall M, Hall DE, Kuo DZ, Cohen E, Agrawal R, Mandl KD, Clifton H, Neff J. JAMA Pediatr. 2013 Feb;167(2):170-7. doi: 10.1001/jamapediatrics.2013.432. PMID: 23266509
Hospital utilization and characteristics of patients experiencing recurrent readmissions within children's hospitals. Berry JG, Hall DE, Kuo DZ, Cohen E, Agrawal R, Feudtner C, Hall M, Kueser J, Kaplan W, Neff J. JAMA. 2011 Feb 16;305(7):682-90. doi: 10.1001/jama.2011.122. PMID: 21325184
Paroxysmal Sympathetic Hyperactivity (Autonomic Storming)
Identifying and managing sources of pain and distress in children with neurological impairment. Hauer J. Pediatr Ann. 2010 Apr;39(4):198-205; quiz 232-4. doi: 10.3928/00904481-20100318-04.
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Informing evidence-based clinical practice guidelines for children with cerebral palsy at risk of osteoporosis: a systematic review. Fehlings D, Switzer L, Agarwal P, Wong C, Sochett E, Stevenson R, Sonnenberg L, Smile S, Young E, Huber J, Milo-Manson G, Kuwaik GA, Gaebler D. Dev Med Child Neurol. 2012 Feb;54(2):106-16. doi: 10.1111/j.1469-8749.2011.04091.x. Epub 2011 Nov 24.
Systematic review of interventions for low bone mineral density in children with cerebral palsy. Hough JP, Boyd RN, Keating JL. Pediatrics. 2010 Mar;125(3):e670-8. doi: 10.1542/peds.2009-0292. Epub 2010 Feb 1.
Pediatric Palliative Care Klick, JC, Hauer J. Curr Prob Pediatri Adolesc Health Care. 2010; 40: 120-151
Use of atypical antipsychotics in children: balancing safety and effectiveness. Kohlstadt I, Vitiello B. Am Fam Physician. 2010 Mar 1;81(5):585.
Self-injurious behaviour in people with intellectual disability. Oliver C, Richards C. Curr Opin Psychiatry. 2010 Sep;23(5):412-6. doi: 10.1097/YCO.0b013e32833cfb80.
Ventilators –Respiratory Physiology
Chronic respiratory failure and neuromuscular disease. Kennedy JD, Martin AJ. Pediatr Clin N Am . 2009; 56: 261-273.
The care of lines and tubes in children. Contemporary Pediatrics Lukish, J. Oct 1, 2010
Caring for the child/young person with a tracheostomy - Best Practice Statement September 2008
Lower urinary tract dysfunction in cerebral palsy. CJD Reid, Borzyskowski, M. Archives of Disease in Childhood 1993;68:739-742.
Medical evaluation and treatment of urolithiasis. Nicoletta JA, Lande MB Pediatric Clinics of North America.2006; 53:479-491.
National Guidelines Clearing House (from AHRQ)