Optimizing health care for children with spina bifida

Developmental Disabilities Research Reviews

Volumn 16, Issue 1, 2010, Pages 66-75

  Liptak, Gregory S ^a   El Samra, Ahmad ^a  

^a SUNY UPSTATE MEDICAL UNIVERSITY   (United States)

Author keywords

Health planning; Health services research; History of medicine; Meningomyelocele; Spina bifida

Indexed keywords

CHILD; CHILD HEALTH CARE; HEALTH CARE DELIVERY; HEALTH CARE QUALITY; HUMAN; MEDICAL RESEARCH; PRIORITY JOURNAL; REGISTER; REVIEW; SPINA BIFIDA; WORLD HEALTH ORGANIZATION;

EID: 77951653361     PISSN: 19405510     EISSN: 10982779     Source Type: Journal    
DOI: 10.1002/ddrr.91     Document Type: Review

References (122)

1. American Academy of Pediatrics. 2002. The medical home. Pediatrics 110:184-186.
2. Ausili E, Focarelli B, Tabacco F, et al. 2010. Transanal irrigation in myelomeningocele children: an alternative, safe and valid approach for neurogenic constipation. Spinal Cord. DOI: 0.1038/sc.2009.186.
3. Balcom AH, Wiatrak M, Biefeld T, et al. 1997. Initial experience with home therapeutic electrical stimulation for continence in the myelomeningocele population. J Urol 158:1272-1276. (Pubitemid 27340284)
4. Banta JV. 1996. The orthopaedic history of spinal dysraphism. II. The modern surgical treatment. Dev Med Child Neurol 38:954-960.
5. Beaudin AE, Stover PJ. 2009. Insights into metabolic mechanisms underlying folate-responsive neural tube defects: a minireview. Birth Defects Res A Clin Mol Teratol 85:274-284.
6. Berwick DM. 2002. A user's manual for the IOM's "ty Chasm" report. Health Aff (Millwood) 21:80-90.
7. Bol KA, Collins JS, Kirby RS. 2006. Survival of infants with neural tube defects in the presence of folic acid fortification. Pediatrics 117:803-813. (Pubitemid 46063223)
8. Boockvar JA, Loudon W, Sutton LN. 2001. Development of the Spitz-Holter valve in Philadelphia. J Neurosurg 95:145-147.
9. Bucan M. Autism Genetic Resource Exchange (AGRE). Cure Autism Now. 2009. Available at: http://www.agre.org/.
10. Bunch WH, Cass AS, Bensman AS, et al. 1972. The comprehensive care clinic. Modern management of spina bifida. St. Louis: Warren H. Green.
11. Burton TM. 2008. Illinois Governor scandal affects funding for care of sick kids. Wall St. Available at: http://online.wsj.com/article/ SB122955878225916363.html.
12. Carrel AL, Myers SE, Whitman BY, et al. 2010. Long-term growth hormone therapy changes the natural history of body composition and motor function in children with Prader-Willi Syndrome. J Clin Endocrinol Metab 95:1131-1136.
13. Casale AJ, Metcalfe PD, Kaefer MA, et al. 2006. Total continence reconstruction: a comparison to staged reconstruction of neuropathic bowel and bladder. J Urol 176:1712-1715.
14. Chait PG, Shandling B, Richards HM, et al. 1997. Fecal incontinence in children: treatment with percutaneous cecostomy tube placement - a prospective study. Radiology 203:621-624. (Pubitemid 27227403)
15. Chambers GK, Cochrane DD, Irwin B, et al. 1996. Assessment of the appropriateness of services provided by a multidisciplinary meningomyelocele clinic. Pediatr Neurosurg 24:92-97. (Pubitemid 26226238)
16. Charney EB, Rorke LB, Sutton LN, et al. 1987. Management of Chiari II complications in infants with myelomeningocele. J Pediatr 111:364-371.
17. Charney EB, Rosenblum M, Finegold D. 1981. Linear growth in a population of children with myelomeningocele. Z Kinderchir 34:415-419. (Pubitemid 12197029)
18. Chervenak FA, McCullough LB, Arabin B. 2009. The Groningen protocol: is it necessary? Is it scientific? Is it ethical? J Perinat Med 37:199-205.
19. CHHS. 1985. Nondiscrimination on the basis of handicap; procedures and guidelines relating to health care for handicapped infants. Final rules. Fed Regist 50,14879-14892.
20. Coleman K, Austin BT, Brach C, et al. 2009. Evidence on the chronic care model in the new millennium. Health Aff (Millwood) 28:75-85.
21. Cremer R, Kleine-Diepenbruck U, Hering F, et al. 2002. Reduction of latex sensitization in spina bifida patients by a primary prophylaxis programme (five years experience). Eur J Pediatr Surg 12(Suppl 1):S19-S21. (Pubitemid 36125458)
22. Danzer E, Finkel RS, Rintoul NE, et al. 2008. Reversal of hindbrain herniation after maternal-fetal surgery for myelomeningocele subsequently impacts on brain stem function. Neuropediatrics 39:359-362.
23. de Lind van Wijngaarden RF, de Klerk LW, Festen DA, et al. 2009. Randomized controlled trial to investigate the effects of growth hormone treatment on scoliosis in children with Prader-Willi syndrome. J Clin Endocrinol Metab 94:1274-1280.
24. Dias MS. 2005. Neurosurgical management of myelomeningocele (spina bifida). Pediatr Rev 26:50-60.
25. Dibbell DG, McCraw JB, Edstrom LE. 1979. Providing useful and protective sensibility to the sitting area in patients with meningomyelocele. Plast Reconstr Surg 64:796-799.
26. Dougherty D, Conway PH. 2008. The "3T's" road map to transform US health care: the "how" of high-quality care. JAMA 299:2319-2321.
27. Dubey L, Krasinski K, Hernanz-Schulman M. 1988. Osteomyelitis secondary to trauma or infected contiguous soft tissue. Pediatr Infect Dis J 7:26-34. (Pubitemid 18040764)
28. Eggleston K, Bir A. 2009. Measuring selection incentives in managed care: evidence from the Massachusetts state employee insurance program. J Risk Insur 76:159-176.
29. Elias ER, Sadeghi-Nejad A. 1994. Precocious puberty in girls with myelodysplasia. Pediatrics 93:521-522.
30. Ellsworth PI, Webb HW, Crump JM, et al. 1996. The Malone antegrade colonic enema enhances the quality of life in children undergoing urological incontinence procedures. J Urol 155:1416-1418.
31. Field B. 1972. The child with spina bifida: medical and social aspects of the problems of a child with multiple handicaps and his family. Med J Aust 2:1284-1287.
32. Forrest DM, Bowen T, Walker GF, et al. 1970. Coordinated care of the child with spina bifida. Lancet 2:934-935.
33. Gawande A. 2004. The bell curve: what happens when patients find out how good their doctors really are? The New Yorker. Available at: http://www.newyorker.com/archive/2004/12/06/041206fa-fact.
34. Gladwell M. 2005. The moral hazard myth: the bad idea behind our failed health-care system. The New Yorker. Available at: http://www.newyorker.com/ archive/2005/08/29/050829fa-fact.
35. Goodman DC. 2009. Unwarranted variation in pediatric medical care. Pediatr Clin North Am 56:745-755.
36. Gozal D, Arens R, Omlin KJ, et al. 1995. Peripheral chemoreceptor function in children with myelomeningocele and Arnold-Chiari malformation type 2. Chest 108:425-431.
37. Gross RH, Cox A, Tatyrek R, et al. 1983. Early management and decision making for the treatment of myelomeningocele. Pediatrics 72:450-458. (Pubitemid 13008848)
38. Harris MB, Banta JV. 1990. Cost of skin care in the myelomeningocele population. J Pediatr Orthop 10:355-361.
39. Hemmingsson H, Stenhammar AM, Paulsson K. 2009. Sleep problems and the need for parental night-time attention in children with physical disabilities. Child Care Health Dev 35:89-95.
40. Henriques Filho PS, Pratesi R. 2009. Sleep disorder: a possible cause of attention deficit in children and adolescents with Chiari malformation type II. Arq Neuropsiquiatr 67:29-34.
41. Hide DW, Semple C. 1970. Coordinated care of the child with spina bifida. Lancet 2:603-604.
42. Hochhaus F, Butenandt O, Ring-Mrozik E. 1999. One-year treatment with recombinant human growth hormone of children with meningomyelocele and growth hormone deficiency: a comparison of supine length and arm span. J Pediatr Endocrinol Metab 12:153-159.
43. Hochhaus F, Butenandt O, Schwarz HP, et al. 1977. Auxological and endocrinological evaluation of children with hydrocephalus and/or meningomyelocele. Eur J Pediatr 156:597-601.
44. Hochleitner BW, Menardi G, Haussler B, et al. 2001. Spina bifida as an independent risk factor for sensitization to latex. J Urol 166:2370-2373.
45. Homer CJ, Klatka K, Romm D, et al. 2008. A review of the evidence for the medical home for children with special health care needs. Pediatrics 122:e922-e937.
46. Johar A, Lim DL, Arif SA, et al. 2005. Low prevalence of latex sensitivity in South African spina bifida children in Cape Town. Pediatr Allergy Immunol 16:165-170.
47. Kaufman BA, Terbrock A, Winters N, et al. 1994. Disbanding a multidisciplinary clinic: effects on the health care of myelomeningocele patients. Pediatr Neurosurg 21:36-44.
48. Kelly KJ, Setlock MA, Davis JP. 1991. Anaphylactic reactions during general anesthesia among pediatric patients - United States, January 1990-January 1991. MMWR Morb Mortal Wkly Rep 40:437-443.
49. Kim SM, Han SW, Choi SH. 2006. Left colonic antegrade continence enema: experience gained from 19 cases. J Pediatr Surg 41:1750-1754.
50. Kinsman SL, Levey E, Ruffing V, et al. 2000. Beyond multidisciplinary care: a new conceptual model for spina bifida services. Eur J Pediatr Surg 10(Suppl 1):35-38.
51. Kirk VG, Morielli A, Brouillette RT. 1999. Sleep-disordered breathing in patients with myelomeningocele: the missed diagnosis. Dev Med Child Neurol 41:40-43.
52. Kirk VG, Morielli A, Gozal D, et al. 2000. Treatment of sleep-disordered breathing in children with myelomeningocele. Pediatr Pulmonol 30:445-452.
53. Kompanje EJ, de Jong TH, Arts WF, et al. 2005. Questionable basis for "hopeless and unbearable suffering" as the criterion for the active termination of life in newborns with spina bifida. Ned Tijdschr Geneeskd 149:2067-2069.
54. Krisberg K. 2005. Medicaid cuts could have dire impact on the disabled. Nations Health 35:6-24.
55. Krumholz HM, Currie PM, Riegel B, et al. 2006. A taxonomy for disease management: a scientific statement from the American Heart Association Disease Management Taxonomy Writing Group. Circulation 114:1432-1445.
56. Krupp S, Kuhn W, Zaech GA. 1983. The use of innervated flaps for the closure of ischial pressure sores. Paraplegia 21:119-126.
57. Lapides J, Diokno AC, Silber SJ, et al. 1972. Clean, intermittent self-catheterization in the treatment of urinary tract disease. J Urol 107:458-461.
58. Leger RR, Meeropol E. 1992. Children at risk: latex allergy and spina bifida. J Pediatr Nurs 7:371-376.
59. Lesavoy MA, Dubrow TJ, Korn HN, et al. 1990. "Sensible" flap coverage of pressure sores in patients with meningomyelocele. Plast Reconstr Surg 85:390-394.
60. Lorber J. 1971. Results of treatment of myelomeningocele. An analysis of 524 unselected cases, with special reference to possible selection for treatment. Dev Med Child Neurol 13:279-303.
61. Malone PS, Ransley PG, Kiely EM. 1990. Preliminary report: the antegrade continence enema. Lancet 336:1217-1218.
62. Marte A, Cotrufo AM, Di IG, et al. 2001. Electromyographic and manometric anorectal evaluation in children affected by neuropathic bladder secondary to myelomeningocele. Minerva Pediatr 53:171-176.
63. Mazon A, Nieto A, Linana JJ, et al. 2000. Latex sensitization in children with spina bifida: follow-up comparative study after two years. Ann Allergy Asthma Immunol 84:207-210.
64. Mazon A, Nieto A, Pamies R, et al. 2005. Influence of the type of operations on the development of latex sensitization in children with myelomeningocele. J Pediatr Surg 40:688-692.
65. McNeely PD, Howes WJ. 2004. Ineffectiveness of dietary folic acid supplementation on the incidence of lipomyelomeningocele: pathogenetic implications. J Neurosurg 100:98-100.
66. Merkens M. 2006. Guidelines for spina bifida and health care services throughout life. Washington, DC: Spina Bifida Association of America.
67. Meyer S, Landau H. 1984. Precocious puberty in myelomeningocele patients. J Pediatr Orthop 4:28-31.
68. Mitsui T, Tanaka H, Moriya K, et al. 2008. Outcomes of lower urinary and bowel function in meningomyelocele patients with augmentation enterocystoplasty. Spinal Cord 46:432-437.
69. Nieto A, Mazon A, Pamies R, et al. 2002. Efficacy of latex avoidance for primary prevention of latex sensitization in children with spina bifida. J Pediatr 140:370-372.
70. Noffsinger EB. 2009. Running group visits in your practice. New York: Springer.
71. O'Leary M, Krailo M, Anderson JR, et al. 2008. Progress in childhood cancer: 50 years of research collaboration, a report from the Children's Oncology Group. Semin Oncol 35:484-493.
72. Oakley GP Jr. 2009. The scientific basis for eliminating folic acid-preventable spina bifida: a modern miracle from epidemiology. Ann Epidemiol 19:226-230.
73. Okamoto GA, Lamers JV, Shurtleff DB. 1983. Skin breakdown in patients with myelomeningocele. Arch Phys Med Rehabil 64:20-23.
74. Okumura MJ, Campbell AD, Nasr SZ, et al. 2006. Inpatient health care use among adult survivors of chronic childhood illnesses in the United States. Arch Pediatr Adolesc Med 160:1054-1060.
75. Palisano RJ, Rosenbaum P, Bartlett D, et al. 2008. Content validity of the expanded and revised gross motor function classification system. Dev Med Child Neurol 50:744-750.
76. Pappo I, Meyer S, Winter S, et al. 1988. Treatment of faecal incontinence in children with spina bifida by biofeedback and behavioural modification. Z Kinderchir 43(Suppl 2):36-37.
77. Peixinho C, Tavares-Ratado P, Tomas MR, et al. 2008. Latex allergy: new insights to explain different sensitization profiles in different risk groups. Br J Dermatol 159:132-136.
78. Pellat GC. 2008. Neurogenic continence. Part I. Pathophysiology and quality of life. Br J Nurs 17:836-841.
79. Pigeon N, Leroi AM, Devroede G, et al. 1997. Colonic transit time in patients with myelomeningocele. Neurogastroenterol Motil 9:63-70.
80. Proos LA, Dahl M, Ahlsten G, et al. 1996. Increased perinatal intracranial pressure and prediction of early puberty in girls with myelomeningocele. Arch Dis Child 75:42-45. (Pubitemid 26249076)
81. Reddy M, Gill SS, Kalkar SR, et al. 2008. Treatment of pressure ulcers: a systematic review. JAMA 300:2647-2662.
82. Richardson K, Campbell MA, Brown MR, et al. 1985. Biofeedback therapy for managing bowel incontinence caused by meningomyelocele. MCN Am J Matern Child Nurs 10:388-392.
83. Rolland JM, O'Hehir RE. 2008. Latex allergy: a model for therapy. Clin Exp Allergy 38:898-912.
84. Rosenblum MF, Finegold DN, Charney EB. 1983. Assessment of stature of children with myelomeningocele, and usefulness of armspan measurement. Dev Med Child Neurol 25:338-342.
85. Rotenstein D, Bass AN. 2004. Treatment to near adult stature of patients with myelomeningocele with recombinant human growth hormone. J Pediatr Endocrinol Metab 17:1195-1200.
86. Rotenstein D, Breen TJ. 1996. Growth hormone treatment of children with myelomeningocele. J Pediatr 128:S28-S31.
87. Rotenstein D, Reigel DH, Lucke JF. 1996. Growth of growth hormone-treated and nontreated children before and after tethered spinal cord release. Pediatr Neurosurg 24:237-241.
88. Scales CD Jr, Wiener JS. 2008. Evaluating outcomes of enterocystoplasty in patients with spina bifida: a review of the literature. J Urol 180:2323-2329.
89. Shandling B, Gilmour RF. 1987. The enema continence catheter in spina bifida: successful bowel management. J Pediatr Surg 22:271-273.
90. Shin M, Besser LM, Correa A. 2008. Prevalence of spina bifida among children and adolescents in metropolitan Atlanta. Birth Defects Res A Clin Mol Teratol 82:748-754.
91. Shoshan L, Ben-Zvi D, Katz-Leurer M. 2008. Use of the anal plug in the treatment of fecal incontinence in patients with meningomyelocele. J Pediatr Nurs 23:395-399.
92. Shurtleff DB, Hayden PW, Loeser JD, et al. 1974. Myelodysplasia: decision for death or disability. N Engl J Med 291:1005-1011.
93. Singh DJ, Bartlett SP, Low DW, et al. 2002. Surgical reconstruction of pediatric pressure sores: long-term outcome. Plast Reconstr Surg 109:265-269.
94. Sinha CK, Butler C, Haddad M. 2008. Left Ante-grade Continent Enema (LACE): review of the literature. Eur J Pediatr Surg 18:215-218.
95. Stafler P, Wallis C. 2008. Prader-Willi syndrome: who can have growth hormone? Arch Dis Child 93:341-345.
96. Stechmiller JK, Cowan L, Whitney JD, et al. 2008. Guidelines for the prevention of pressure ulcers. Wound Repair Regen 16:151-168.
97. Stevenson KL. 2004. Chiari type II malformation: past, present, and future. Neurosurg Focus 16:E5;1-7.
98. Tew BJ, Laurence KM. 1976. The effects of admission to hospital and surgery on children with spina bifida. Dev Med Child Neurol Suppl:119-125.
99. Thomson HG, Azhar AM, Healy H. 2001. The recurrent neurotrophic buttock ulcer in the meningomyelocele paraplegic: a sensate flap solution. Plast Reconstr Surg 108:1192-1196.
100. Trollmann R, Bakker B, Lundberg M, et al. 2006. Growth in pre-pubertal children with myelomeningocele (MMC) on growth hormone (GH): the KIGS experience. Pediatr Rehabil 9:144-148.
101. Trollmann R, Dorr HG, Strehl E, et al. 1996a. Growth and pubertal development in patients with meningomyelocele: a retrospective analysis. Acta Pediatr 85:76-80.
102. Trollmann R, Strehl E, Dorr HG. 1998b. Precocious puberty in children with myelomeningocele: treatment with gonadotropin-releasing hormone analogues. Dev Med Child Neurol 40:38-43.
103. Trollmann R, Strehl E, Maier-Brandt B, et al. 1996b. Effects of GnRH analogues in the treatment of precocious puberty in children with myelomeningocele - preliminary results. Eur J Pediatr Surg 6(Suppl 1):42-43.
104. Trollmann R, Strehl E, Wenzel D, et al. 1998a. Arm span, serum IGF-1 and IGFBP-3 levels as screening parameters for the diagnosis of growth hormone deficiency in patients with myelomeningocele - preliminary data. Eur J Pediatr 157:451-455.
105. Trollmann R, Strehl E, Wenzel D, et al. 2000. Does growth hormone (GH) enhance growth in GH-deficient children with myelomeningocele? J Clin Endocrinol Metab 85:2740-2743.
106. Tu HT, Cunningham PJ. 2005. Public coverage provides vital safety net for children with special health care needs. Issue Brief Cent Stud Health Syst Change 98:1-7.
107. Van WM, Van BS, Van LE, et al. 2006. Is an anal plug useful in the treatment of fecal incontinence in children with spina bifida or anal atresia? J Urol 176:342-344.
108. Vande VS, Van BS, Van RK, et al. 2007. Achieving fecal continence in patients with spina bifida: a descriptive cohort study. J Urol 178:2640-2644.
109. Verhagen E, Sauer PJ. 2005. The Groningen protocol - euthanasia in severely ill newborns. N Engl J Med 352:959-962.
110. Verhagen AA, Sol JJ, Brouwer OF, et al. 2005. Deliberate termination of life in newborns in The Netherlands; review of all 22 reported cases between 1997 and 2004. Ned Tijdschr Geneeskd 149:183-188.
111. Wald A. 1981. Use of biofeedback in treatment of fecal incontinence in patients with meningomyelocele. Pediatrics 68:45-49.
112. Ward SL, Nickerson BG, van der HA, et al. 1986. Absent hypoxic and hypercapneic arousal responses in children with myelomeningocele and apnea. Pediatrics 78:44-50.
113. Waters KA, Forbes P, Morielli A, et al. 1998. Sleep-disordered breathing in children with myelomeningocele. J Pediatr 132:672-681.
114. Whitehead WE, Parker L, Bosmajian L, et al. 1986. Treatment of fecal incontinence in children with spina bifida: comparison of biofeedback and behavior modification. Arch Phys Med Rehabil 67:218-224.
115. Whitney J, Phillips L, Aslam R, et al. 2006. Guidelines for the treatment of pressure ulcers. Wound Repair Regen 14:663-679.
116. Wing NA, Findlay FJ, Beasley SW, et al. 2001. Does anorectal manometry predict clinical outcome after laparoscopic ACE procedures in children with spina bifida? Colorectal Dis 3:185-188.
117. World Health Organization. 2001. International Classification of Functioning, Disability and Health (ICF). Geneva, Switzerland: World Health Organization.
118. Xiao CG. 2006. Reinnervation for neurogenic bladder: historic review and introduction of a somatic-autonomic reflex pathway procedure for patients with spinal cord injury or spina bifida. Eur Urol 49:22-28.
119. Yardley IE, Pauniaho SL, Baillie CT, et al. 2009. After the honeymoon comes divorce: long-term use of the antegrade continence enema procedure. J Pediatr Surg 44:1274-1276.
120. Yassin MS, Sanyurah S, Lierl MB, et al. 1992. Evaluation of latex allergy in patients with meningomyelocele. Ann Allergy 69:207-211.
121. Zegers BS, Winkler-Seinstra PL, Uiterwaal CS, et al. 2009. Urinary tract infections in children with spina bifida: an inventory of 41 European centers. Pediatr Nephrol 24:783-788.
122. Zhang J. 2006. Amid fight for life, lupus victim fights for insurance. Available at: http://spanio.org/content/view/101/22/.