Guidelines for management of scoliosis in rett syndrome patients based on expert consensus and clinical evidence

Spine

Volumn 34, Issue 17, 2009, Pages

  Downs, Jenny ^{a,b,c,d,e,f,g}   Bergman, Anke ^h   Carter, Philippa ^h   Anderson, Alison ^h   Palmer, Greta M ^h   Roye, David ^h   Van Bosse, Harold ^h   Bebbington, Ami ^h   Larsson, Eva Lena ^h   Smith, Brian G ^h   Baikie, Gordon ^h   Fyfe, Sue ^h   Leonard, Helen ^h  

^a UNIVERSITY OF WESTERN AUSTRALIA   (Australia)

^b ROYAL CHILDREN'S HOSPITAL   (Australia)

^c Department of Medicine   (United States)

^d SHRINERS HOSPITALS FOR CHILDREN   (United States)

^e LINKÖPING UNIVERSITY HOSPITAL   (Sweden)

^f YALE UNIVERSITY   (United States)

^g CURTIN UNIVERSITY   (Australia)

^h Curtain University of Technology ^*

Author keywords

Delphi technique; Neuromuscular diseases; Practice guideline; Rett syndrome; Scoliosis

Indexed keywords

ARTICLE; BODY POSTURE; BRACE; COMORBIDITY; CONSENSUS; DELPHI STUDY; E-MAIL; EVIDENCE BASED PRACTICE; FEMALE; HUMAN; IMAGING; INFORMATION RETRIEVAL; LIFESPAN; MEDICAL INFORMATION; MOBILIZATION; NUTRITIONAL STATUS; OPEN ENDED QUESTIONNAIRE; PAIN; PHYSICAL ACTIVITY; POSTOPERATIVE CARE; PRACTICE GUIDELINE; PRIORITY JOURNAL; RETT SYNDROME; SCOLIOSIS; SEIZURE;

CHILD; EVIDENCE-BASED MEDICINE; FEMALE; HUMANS; INTERNATIONAL COOPERATION; RETT SYNDROME; SCOLIOSIS;

EID: 68949116178     PISSN: 03622436     EISSN: 15281159     Source Type: Journal    
DOI: 10.1097/BRS.0b013e3181a95ca4     Document Type: Article

References (64)

1. The Rett Syndrome Diagnostic Criteria Work Group. Diagnostic Criteria for Rett Syndrome. Ann Neurol 1988;23:425-428
2. Amir RE, Fang P, Yu Z, et al. Mutations in exon 1 of MECP2 are a rare cause of Rett syndrome. J Med Genet 2005;42:el5.
3. Hagberg B, Hanefeld F, Percy A, et al. An update on clinically applicable diagnostic criteria in Rett syndrome. Comments to Rett Syndrome Clinical Criteria Consensus Panel Satellite to European Paediatric Neurology Society Meeting, Baden Baden, Germany, 11 September 2001. EurJ Paediatr Neurol 2002;6:293-297
4. Jian L, Nagarajan L, de Klerk N, et al. Predictors of seizure onset in Rett syndrome. / Pediatr 2006;149:542-547
5. Oddy WH, Webb KG, Baikie G, et al. Feeding experiences and growth status in a Rett syndrome population. / Pediatr Gastroenterol Nutr 2007; 45:582-590
6. Julu PO, Kerr AM, Apartopoulos F, et al. Characterization of breathing and associated central autonomic dysfunction in the Rett disorder. Arch Dis Child 2001;85:29-37.
7. Axelrod FB, Chelimsky GG, Weese-Mayer DE. Pediatric autonomic disorders. Pediatrics 2006;118:309-321
8. Leonard H, Thomson M, Glasson E, et al. A population-based approach to the investigation of osteopenia in Rett syndrome. Dev Med Child Neurol 1999;41:323-328
9. Huang TJ, Lubicky JP, Hammerberg KW. Scoliosis in Rett syndrome. Orthop Rev 1994;23:931-937
10. Hagberg B, Witt Engerstrom I. Rett syndrome: a suggested staging system for describing impairment profile with increasing age towards adolescence. Am J Med Genet Suppl 1986;1:47-59.
11. Bassett GS, Tolo VT. The incidence and natural history of scoliosis in Rett syndrome. Dev Med Child Neurol 1990;32:963-966
12. Ager S, Fyfe S, Christodoulou J, et al. Predictors of scoliosis in Rett syndrome. J Child Neurol 2006;21:809-813
13. Keret D, Bassett GS, Bunnell WP, et al. Scoliosis in Rett syndrome. J Pediatr Orthop 1988;8:138-142
14. Lidstrom J, Stokland E, Hagberg B. Scoliosis in Rett syndrome. Clinical and biological aspects. Spine 1994;19:1632-1635
15. Harrison DJ, Webb PJ. Scoliosis in the Rett syndrome: natural history and treatment. Brain Dev 1990;12:154-156
16. Berven S, Bradford DS. Neuromuscular scoliosis: causes of deformity and principles for evaluation and management. Semin Neurol 2002;22:167-178
17. Hanks SB. Motor disabilities in the Rett syndrome and physical therapy strategies. Brain Dev 1990;12:157-161
18. Kerr AM, Webb P, Prescott RJ, et al. Results of surgery for scoliosis in Rett syndrome. / Child Neurol 2003;18:703-708
19. Lotan M, Merrick J, Carmeli E. Managing scoliosis in a young child with Rett syndrome: a case study. The Scientific World Journal 2005;5:264-273
20. Miller F. Spinal deformity secondary to impaired neurologic control. J Bone Joint Surg Am 2007;89A: 143-147
21. Mehta JS, Gibson MJ. The treatment of neuromuscular scoliosis. Curr Orthop 2003;17:313-321
22. Letts M, Pang E, D'Astous J, et al. The influence of desmopressin on blood loss during spinal fusion surgery in neuromuscular patients. Spine 1998;23: 475-478
23. Theroux MC, Corddry DH, Tietz AE, et al. A study of desmopressin and blood loss during spinal fusion for neuromuscular scoliosis: a randomized, controlled, double-blinded study. Anesthesiology 1997;87:260-267
24. Laurvick CL, de Klerk N, Bower C, et al. Rett syndrome in Australia: a review of the epidemiology. J Pediatr 2006;148:347-352
25. Ager S, Downs J, Fyfe S, et al. Parental experiences of scoliosis management in Rhett Syndrome. Disability and Rehabilitation 2009;(e-pub ahead of print).
26. Campbell SM, Braspenning J, Hutchinson A, et al. Research methods used in developing and applying quality indicators in primary care. BMJ 2003;326: 816-819
27. National Health and Medical Research Council. A guide to the development, implementation, and evaluation of clinical practice guidelines, 1999 [Commonwealth of Australia]. Available at: http://www.nhmrc.gov.au/ publications/synopses/-files/cp30.pdf. Accessed September 25, 2008.
28. Royal College of Paediatrics and Child Health. Standards for development of clinical guidelines in paediatrics and child health, 2006 [Commonwealth of Australia]. Available at: http://www.rcpch.ac.uk/Publications/Publications-list- by-date. Accessed September 25, 2008.
29. Leonard H, Slack-Smith L, Phillips T, et al. How can the internet help parents of children with rare neurological disorders} J Child Neurol 2004;19:902-907
30. Bebbington A, Anderson A, Ravine D, et al. Investigating genotype-phenotype relationships in Rett syndrome using an international dataset. Neurology 2008;70:868-875
31. Scottish Intercollegiate Guidelines Network. Sign 50: A guideline developer's handbook, 2008. Available at: http://www.sign.ac.Uk/pdf/sign50/.pdf. Accessed August 5, 2008.
32. Lotan M, Isakov E, Merrick J. Improving functional skills and physical fitness in children with Rett syndrome. J Intellect Disabil Res 2004;48: 730-735
33. Holm VA, King HA. Scoliosis in the Rett syndrome. Brain Dev 1990;12: 151-153
34. Burgoyne W, Fairbank J. The management of scoliosis. Curr Paediatr 2001; 11:323-331
35. Cassar-Pullicino V, Eisenstein S. Imaging in scoliosis: what, why and how? Clin Radiol 2002;57:543-562
36. Wright N. Imaging in scoliosis. Arch Dis Child 2000;82:38-40.
37. Gupta MC, Wijesekera S, Sossan A, et al. Reliability of radiographic parameters in neuromuscular scoliosis. Spine 2007;32:691-695
38. Loder RT, Spiegel D, Gutknecht S, et al. The assessment of intraobserver and interobserver error in the measurement of noncongenital scoliosis in children ≤10 years of age. Spine 2004;29:2548-2553
39. Thomsen M, Abel R. Imaging in scoliosis from the orthopaedic surgeon's point of view. EurJ Radiol 2006;58:41-47
40. Gruelich WW, Pyle SI. Radiographic Atlas of Skeletal Development of the Hand and Wrist. 2nd ed. Palo Alto, CA: Stanford University Press; 1959.
41. Holmes KJ, Michael SM, Thorpe SL, et al. Management of scoliosis with special seating for the non-ambulant spastic cerebral palsy population-a biomechanical study. Clin Biomech 2003;18:480-487
42. Vanlint S, Nugent M, Durvasula S, et al. Vitamin D and people with intellectual disability. Aust Fam Physician 2008;37:348-351
43. Bonjour JP, Carrie AL, Ferrari S, et al. Calcium-enriched foods and bone mass growth in prepubertal girls: a randomized, double-blind, placebo-controlled trial. J Clin Invest 1997;99:1287-1294
44. Cheng S, Lyytikainen A, Kroger H, et al. Effects of calcium, dairy product, and vitamin D supplementation on bone mass accrual and body composition in 10-12-yr-old girls: a 2-yr randomized trial. Am J Clin Nutr 2005;82: 1115-1126
45. Olafsson Y, Saraste H, Al-Dabbagh Z. Brace treatment in neuromuscular spine deformity. / Pediatr Orthop 1999;19:376-379
46. Knoeller SM, Stuecker RD. Impact of early surgical correction of curves in paralytic scoliosis. Saudi Med J 2002;23:1181-1186
47. Sarwahi V, SarwarkJF, SchaferMF, et al. Standards in anterior spine surgery in pediatric patients with neuromuscular scoliosis. J Pediatr Orthop 2001; 21:756-760
48. Williamson JB. Management of the spine in cerebral palsy. Curr Orthop 2003;17:117-123
49. Khalil SN, Hanna E, Farag A, et al. Rett syndrome: anesthesia management. Paediatr Anaesth 2002;12:375.
50. Konen AA, Joshi GP, Kelly CK. Epidural analgesia for pain relief after scoliosis surgery in a patient with Rett syndrome. Anesth Analg 1999;89:451-452
51. Kim JT, Muntyan I, Bashkirov IL, et al. The use of bispectral index monitoring in the anesthetic management of a patient with Rett syndrome undergoing scoliosis surgery. J Clin Anesth 2006;18:161-162
52. Tofil NM, Buckmaster MA, Winkler MK, et al. Deep sedation with propofol in patients with Rett syndrome. J Child Neurol 2006;21:857-860
53. Master DL, Thompson GH, Poe-Kochert C, et al. Spinal cord monitoring for scoliosis surgery in Rett syndrome: can these patients be accurately monitored? J Pediatr Orthop 2008;28:342-346
54. Gibson PR. Anaesthesia for correction of scoliosis in children. Anaesth Intensive Care 2004;32:548-559
55. Westerlund LE, Gill SS, Jarosz TS, et al. Posterior-only unit rod instrumentation and fusion for neuromuscular scoliosis. Spine 2001;26:1984-1989
56. Tsirikos Al, Chang WN, Dabney KW, et al. Comparison of one-stage versus two-stage anteroposterior spinal fusion in pediatric patients with cerebral palsy and neuromuscular scoliosis. Spine 2003;28:1300-1305
57. Takeshita K, Lenke LG, Bridwell KH, et al. Analysis of patients with nonam-bulatory neuromuscular scoliosis surgically treated to the pelvis with intra-operative halo-femoral traction. Spine 2006;31:2381-2385
58. Vialle R, Delecourt C, Morin C. Surgical treatment of scoliosis with pelvic obliquity in cerebral palsy: the influence of intraoperative traction. Spine 2006;31:1461-1466
59. Thacker M, Hui JH, Wong HK, et al. Spinal fusion and instrumentation for paediatric neuromuscular scoliosis: retrospective review. J Orthop Surg 2002;10:144-151
60. Larsson EL, Aaro SI, Normelli HC, et al. Long-term follow-up of functioning after spinal surgery in patients with neuromuscular scoliosis. Spine 2005;30: 2145-2152
61. Samuelsson K, Larsson EL, Normelli H, et al. Development of an instrument for clinical evaluation after surgery for neuromuscular scoliosis. Eur Spine J 1996;5:400-406
62. Playfor S, Jenkins I, Boyles C, et al. Consensus guidelines on sedation and analgesia in critically ill children. Intensive Care Med 2006;32:1125-1136
63. Foster SL, Mash EJ. Assessing social validity in clinical treatment research: issues and procedures. J Consult Clin Psychol 1999;67:308-319
64. Cass H, Reilly S, Owen L, et al. Findings from a multidisciplinary clinical case series of females with Rett syndrome. Dev Med Child Neurol 2003;45: 325-337