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Last Updated:
November 16, 2016
Dental care

Oral health care for children with developmental disabilities. Norwood KW Jr, Slayton RL; Council on Children With Disabilities; Section on Oral Health. Pediatrics. 2013 Mar;131(3):614-9. doi: 10.1542/peds.2012-3650. Epub 2013 Feb 25.



Constipation in the pediatric patient: an overview and pharmacologic considerations.
Blackmer AB, Farrington EA. J Pediatr Health Care. 2010 Nov-Dec;24(6):385-99. doi: 10.1016/j.pedhc.2010.09.003.

Feeding Issues and Nutrition

Common gastrointestinal symptoms in pediatric palliative care: nausea, vomiting, anorexia, cachexia.
Santucci G, Mack JW. Pediatr Clin N Am 2007; 54: 673-689


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.
Srivastava R, Downey EC, O'Gorman M, Feola P, Samore M, Holubkov R, Mundorff M, James BC, Rosenbaum P, Young PC, Dean JM. Pediatrics. 2009 Jan;123(1):338-45. doi: 10.1542/peds.2007-1740.

Reflux related hospital admissions after fundoplication in children with neurological impairment: retrospective cohort study. Srivastava R, Berry JG, Hall M, Downey EC, O'Gorman M, Dean JM, Barnhart DC. BMJ. 2009 Nov 18;339:b4411. doi: 10.1136/bmj.b4411.

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.

Health Maintenance for Complex Care Conditions

Health supervision for children with Down syndrome. Bull MJ; Committee on Genetics. Pediatrics. 2011 Aug;128(2):393-406. doi: 10.1542/peds.2011-1605. Epub 2011 Jul 25. Erratum in: Pediatrics. 2011 Dec;128(6):1212.

Guidelines for the care of the child with special health care needs. Goldson E, Louch G, Washington K, Scheu H. Adv Pediatr. 2006;53:165-82.

Management of children with holoprosencephaly. Levey EB, Stashinko E, Clegg NJ, Delgado MR. Am J Med Genet C Semin Med Genet. 2010 Feb 15;154C(1):183-90. doi: 10.1002/ajmg.c.30254.

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.

Use of segmental measures to estimate stature in children with cerebral palsy. Stevenson, RD. Arch Pediatr Adolesc Med. 1995; 149: 658-662.

Knee Height as a predictor of recumbent length for individuals with mobility –impaired cerebral palsy. Hogan, ES. Journal of the American College of Nutrition. 1999; 18:201-205.

Health Services Research

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.

A national profile of caregiver challenges among more medically complex children with special health care needs. Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH. Arch Pediatr Adolesc Med. 2011 Nov;165(11):1020-6. doi: 10.1001/archpediatrics.2011.172.

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.

Effects of providing comprehensive ambulatory services to children with chronic conditions. Liptak GS, Burns CM, Davidson PW, McAnarney E. Arch Pediatr Adolesc Med. 1998; 152: 1003-1008.

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.

A home for medically complex children: the role of hospital programs. Cohen E, Friedman J, Nicholas DB, Adams S, Rosenbaum P. J Healthc Qual. 2008 May-Jun;30(3):7-15.

A review of the evidence for the medical home for children with special health care needs. Homer CJ, Klatka K, Romm D, Kuhlthau K, Bloom S, Newacheck P, Van Cleave J, Perrin JM. Pediatrics. 2008 Oct;122(4):e922-37. Doi: 10.1542/peds.2007-3762.

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

Neurological Issues

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.

Pharmacological management for agitation and aggression in people with acquired brain injury. Fleminger S, Greenwood RJ, Oliver DL. Cochrane Database Syst Rev. 2006 Oct 18;(4):CD003299.

Orthopedic Issues

Consensus Statement on Hip Surveillance for Children with Cerebral Palsy: 2008 Australian Standards of Care


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.

Palliative Care

Pediatric Palliative Care Klick, JC, Hauer J. Curr Prob Pediatri Adolesc Health Care. 2010; 40: 120-151

Psychotropic Medications

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.

Respiratory problems

Ventilators –Respiratory Physiology

Chronic respiratory failure and neuromuscular disease. Kennedy JD, Martin AJ. Pediatr Clin N Am . 2009; 56: 261-273.

Technology – tubes

PICC lines

The care of lines and tubes in children. Contemporary Pediatrics Lukish, J. Oct 1, 2010

Tracheostomy care

Caring for the child/young person with a tracheostomy - Best Practice Statement September 2008

Urological Issues

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)