Acompanhamento ambulatorial de pacientes com mielomeningocele em um hospital pediátrico

Salomão, J. Francisco; Leibinger, Renê D.; Carvalho, João G.S.; Pinheiro, Jose Alvaro B.; Lucchesi, Gianne L.; Bomfim, Vera

doi:10.1590/S0004-282X1995000300013

Resumos

A mielomeningocele constitui a mais freqüente malformação congênita do sistema nervoso e, a despeito de sua complexidade e acometimento de múltiplos órgãos, é compatível a sobrevida prolongada. Por esses motivos, o acompanhamento de pacientes com essa malformação assume vital importância no que diz respeito à qualidade de sua sobrevida. Com o objetivo de avaliar a qualidade do acompanhamento de portadores de spina bifida cística tratados em um hospital pediátrico, 54 pacientes foram examinados e seus familiares entrevistados. A inexistência de um centro multidisciplinar de tratamento de portadores de defeito de fechamento do tubo neural na cidade do Rio de Janeiro obrigou os pacientes a se deslocarem para locais geograficamente distantes entre si em busca de tratamento complementar em várias especialidades correlatas, com reflexos negativos na qualidade de sobrevida. Desta maneira, apenas uma quarta parte dos pacientes era capaz de se locomover e a chamada deambulação comunitária era praticamente nenhuma. Apenas 2/3 se submetiam regularmente a fisioterapia e apenas a metade era regularmente acompanhada por ortopedistas. Quase 50% dos pacientes não foram orientados a procurar assistência urológica e 75% apresentavam incontinência urinária. A incidência de infecções urinárias de repetição foi 72,2%. As complicações e intercorrências neurocirúrgicas propriamente ditas tiveram incidências comparáveis às observadas na literatura. Concluímos que a qualidade de sobrevida dos pacientes estudados é significativamente afetada por fatores sócio-econômicos e pela ausência de centros multidisciplinares de tratamento.

spina bifida; mielomeningocele; disrafismo espinhal; clínica multidisciplinar

Myelomeningocele is the most common congenital malformation of the nervous system and despite its complexity and involvement of multiple organs is compatible with long survival. The peculiar characteristics of this malformation expose myelomeningocele patients to acute and chronic care problems with effects in quality of survival. In order to evaluate the quality of the follow-up of spina bifida patients in a pediatric hospital, the authors examined 54 patients attending the neurosurgical outpatient unity of a pediatric hospital. The lack of a multidisciplinary spina bifida clinic in Rio de Janeiro forced the patients to pursuit for complimentary medical and paramedical care outside the hospital with significant effects in the quality of survival. In consequence, only 25% of the patients were able to walk and community ambulation was nearly absent. Only 66.6% had a regular rehabilitation program and nearly 50% had routine orthopedics consultations. Almost half of the patients had no urological referral at all and 75% were incontinent, with recurrent urinary infections ranging 72.2%. The rates of neurosurgical complications were similar to those observed in the literature. We concluded that the quality of survival of patients with neural tube defects is strongly influenced by the adverse socio-economical conditions and the lack of a spina bifida multidisciplinary clinic.

Spina bifida; neural tube defects; myelomeningocele; multidisciplinary clinic

Acompanhamento ambulatorial de pacientes com mielomeningocele em um hospital pediátrico

Follow-up of myelomeningocele patients in the outclinic of a pediatric hospital

J. Francisco Salomão^I; Renê D. Leibinger^I; João G.S. Carvalho^I; Jose Alvaro B. Pinheiro^I; Gianne L. Lucchesi^I; Vera Bomfim^II

^IServiço de Neurocirurgia Pediátrica, Departamento de Cirurgia

^IIDepartamento de Pediatria, Instituto Fernandes Figueira (M.S. - Fiocruz), Rio de Janeiro, RJ

RESUMO

A mielomeningocele constitui a mais freqüente malformação congênita do sistema nervoso e, a despeito de sua complexidade e acometimento de múltiplos órgãos, é compatível a sobrevida prolongada. Por esses motivos, o acompanhamento de pacientes com essa malformação assume vital importância no que diz respeito à qualidade de sua sobrevida. Com o objetivo de avaliar a qualidade do acompanhamento de portadores de spina bifida cística tratados em um hospital pediátrico, 54 pacientes foram examinados e seus familiares entrevistados. A inexistência de um centro multidisciplinar de tratamento de portadores de defeito de fechamento do tubo neural na cidade do Rio de Janeiro obrigou os pacientes a se deslocarem para locais geograficamente distantes entre si em busca de tratamento complementar em várias especialidades correlatas, com reflexos negativos na qualidade de sobrevida. Desta maneira, apenas uma quarta parte dos pacientes era capaz de se locomover e a chamada deambulação comunitária era praticamente nenhuma. Apenas 2/3 se submetiam regularmente a fisioterapia e apenas a metade era regularmente acompanhada por ortopedistas. Quase 50% dos pacientes não foram orientados a procurar assistência urológica e 75% apresentavam incontinência urinária. A incidência de infecções urinárias de repetição foi 72,2%. As complicações e intercorrências neurocirúrgicas propriamente ditas tiveram incidências comparáveis às observadas na literatura. Concluímos que a qualidade de sobrevida dos pacientes estudados é significativamente afetada por fatores sócio-econômicos e pela ausência de centros multidisciplinares de tratamento.

Palavras-chave: spina bifida, mielomeningocele, disrafismo espinhal, clínica multidisciplinar.

SUMMARY

Myelomeningocele is the most common congenital malformation of the nervous system and despite its complexity and involvement of multiple organs is compatible with long survival. The peculiar characteristics of this malformation expose myelomeningocele patients to acute and chronic care problems with effects in quality of survival. In order to evaluate the quality of the follow-up of spina bifida patients in a pediatric hospital, the authors examined 54 patients attending the neurosurgical outpatient unity of a pediatric hospital. The lack of a multidisciplinary spina bifida clinic in Rio de Janeiro forced the patients to pursuit for complimentary medical and paramedical care outside the hospital with significant effects in the quality of survival. In consequence, only 25% of the patients were able to walk and community ambulation was nearly absent. Only 66.6% had a regular rehabilitation program and nearly 50% had routine orthopedics consultations. Almost half of the patients had no urological referral at all and 75% were incontinent, with recurrent urinary infections ranging 72.2%. The rates of neurosurgical complications were similar to those observed in the literature. We concluded that the quality of survival of patients with neural tube defects is strongly influenced by the adverse socio-economical conditions and the lack of a spina bifida multidisciplinary clinic.

Key words:Spina bifida, neural tube defects, myelomeningocele, multidisciplinary clinic.

Texto completo disponível apenas em PDF.

Full text available only in PDF format.

Aceite: 7-janeiro-1995.

Dr. José Francisco Salomão - Av. N.S. Copacabana 1018/608 - 22060-000 Rio de Janeiro RJ - Brasil.

1. Bailey RB. Urologic management of spina bifida. In Rekate HL (ed). Comprehensive management of spina bifida, Boca Raton CRC Press: 1991, p 185-213.
2. Carrol N. The orthopedic and orthotic management of the spina bifida child. Clin Neurosurg 1983,30:413-435.
3. Charney E, Weller S, Sutton L, Bruce DA. Managment of the newborn with meningomyelocele: time for a decision making process. Pediatrics 1985, 75:58-64.
4. Dallyn L, Garrison-Jones C. Reaching adulthood: the long-term psychosocial adjustment of children with spina bifida. In Rekate HL (ed). Comprehensive management of spina bifida, Boca Raton: CRC Press, 1991, p 215-237.
5. Dias L. The orthopedic aspects of spinal dysraphism. In Raimondi AJ, Choux M, Di Rocco C (eds). The Pediatric spine, Vol 1. (Development and the dysraphic state).New York: Springer, 1989, p 210-219.
6. Dixon MS, Rekate HL. Pediatric management of children with myelodysplasia. In Rekate HL (ed). Comprehensive management of spina bifida, Boca Raton: CRC Press, 1991,. p 49-65.
7. Epstein F. Meningomyelocele: "pitfalls" in early and late management. Clin Neurosurg 1983, 30:366-383.
8. Kaufman BA, Terbrock A, Winters N, Ito J, Klosterman A, Park TS. Disbanding a multidisciplinary clinic: effects on the healt care of myelomeningocele patients. Pediatr Neurosurg 1994, 21:36-44.
9. Laurence KM. The natural history of spina bifida cistica: detailed analysis of 407 cases. Arch Dis Child 1964, 39:41.
10. Lorber J. Results of treatment of myelomeningocele: an analysis of 524 unselected cases whith special reference to possible selecion for treatment. Dev Med Child Neurol 1971, 13:279-303.
11. McLone DG. Results of treatment of children bom with a myelomeningocele. Clin Neurosurg 1983, 30:407-435.
12. McLone DG. Tratment of myelomeningocele: arguments against selection. Clin Neurosurg 1986, 33:359-370.
13. McLone DG. Continuing concepts in management of spina bifida. Pediatr Neurosurg 1992, 18:254-256. 14 McLone DG, Czyzewski D, Raimondi AJ, Sommers RC. Central nervous system infections as a limiting factor in the intelligence of children with meningomyelocele. Pediatrics 1982, 70:338-342.
15. McLone DG, Naidich. Myelomeningocele : outcome and late complications. In McLaurin RL, Schut L, Venes JL, Epstein F (eds). Pediatric neurosurgery: surgery of the developing nervous system Ed 2. Philadelphia: Saunders, 1989, p 53-70.
16. Rekate HL. Neurosurgical management of the newborn with spina bifida. In Rekate HL (ed). Comprehensive management of spina bifida. Boca Raton: CRC Press, 1991, p 28.
17. Salomão JF, Leibinger RD, Menezes MLB, Carvalho JGS - Infecção nas derivações ventriculares em uma população pediátrica. Arq Bras Neurocirurg 1993, 12:255-264.
18. Soare PL, Raimondi AJ. Intellectual and perceptual motor characteristics of treated myelomeningocele children. Am J Dis Child 1977, 131:199-204.

Datas de Publicação

Publicação nesta coleção
09 Dez 2010
Data do Fascículo
Set 1995

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

[1] 1. Bailey RB. Urologic management of spina bifida. In Rekate HL (ed). Comprehensive management of spina bifida, Boca Raton CRC Press: 1991, p 185-213.

[2] 2. Carrol N. The orthopedic and orthotic management of the spina bifida child. Clin Neurosurg 1983,30:413-435.

[3] 3. Charney E, Weller S, Sutton L, Bruce DA. Managment of the newborn with meningomyelocele: time for a decision making process. Pediatrics 1985, 75:58-64.

[4] 4. Dallyn L, Garrison-Jones C. Reaching adulthood: the long-term psychosocial adjustment of children with spina bifida. In Rekate HL (ed). Comprehensive management of spina bifida, Boca Raton: CRC Press, 1991, p 215-237.

[5] 5. Dias L. The orthopedic aspects of spinal dysraphism. In Raimondi AJ, Choux M, Di Rocco C (eds). The Pediatric spine, Vol 1. (Development and the dysraphic state).New York: Springer, 1989, p 210-219.

[6] 6. Dixon MS, Rekate HL. Pediatric management of children with myelodysplasia. In Rekate HL (ed). Comprehensive management of spina bifida, Boca Raton: CRC Press, 1991,. p 49-65.

[7] 7. Epstein F. Meningomyelocele: "pitfalls" in early and late management. Clin Neurosurg 1983, 30:366-383.

[8] 8. Kaufman BA, Terbrock A, Winters N, Ito J, Klosterman A, Park TS. Disbanding a multidisciplinary clinic: effects on the healt care of myelomeningocele patients. Pediatr Neurosurg 1994, 21:36-44.

[9] 9. Laurence KM. The natural history of spina bifida cistica: detailed analysis of 407 cases. Arch Dis Child 1964, 39:41.

[10] 10. Lorber J. Results of treatment of myelomeningocele: an analysis of 524 unselected cases whith special reference to possible selecion for treatment. Dev Med Child Neurol 1971, 13:279-303.

[11] 11. McLone DG. Results of treatment of children bom with a myelomeningocele. Clin Neurosurg 1983, 30:407-435.

[12] 12. McLone DG. Tratment of myelomeningocele: arguments against selection. Clin Neurosurg 1986, 33:359-370.

[13] 13. McLone DG. Continuing concepts in management of spina bifida. Pediatr Neurosurg 1992, 18:254-256. 14 McLone DG, Czyzewski D, Raimondi AJ, Sommers RC. Central nervous system infections as a limiting factor in the intelligence of children with meningomyelocele. Pediatrics 1982, 70:338-342.

[14] 15. McLone DG, Naidich. Myelomeningocele : outcome and late complications. In McLaurin RL, Schut L, Venes JL, Epstein F (eds). Pediatric neurosurgery: surgery of the developing nervous system Ed 2. Philadelphia: Saunders, 1989, p 53-70.

[15] 16. Rekate HL. Neurosurgical management of the newborn with spina bifida. In Rekate HL (ed). Comprehensive management of spina bifida. Boca Raton: CRC Press, 1991, p 28.

[16] 17. Salomão JF, Leibinger RD, Menezes MLB, Carvalho JGS - Infecção nas derivações ventriculares em uma população pediátrica. Arq Bras Neurocirurg 1993, 12:255-264.

[17] 18. Soare PL, Raimondi AJ. Intellectual and perceptual motor characteristics of treated myelomeningocele children. Am J Dis Child 1977, 131:199-204.