Abstract
Objective
The objectives of this study were to assess the quality of life (QOL) of operated patients with spina bifida (SB) in their initial years and to elucidate the factors affecting the QOL and the timing of proposed interventions.
Patients and methods
We studied 18 patients operated on for SB, aging 3 years or more at the time of assessment. The quality of life score was calculated for all the patients by the parental-administered questionnaire method. The impact of all these factors on the social and school lives of these patients was studied.
Results
Eleven patients were having neurogenic bladder. Thirteen patients were having stool problems which ranged from mild to severe constipation and soiling. Five patients were having lower limb deformities interfering with normal ambulation. Ten patients were able to walk on their own without any help, four patients were using either crutches or help of the caregiver for ambulation while the remaining four patients were non-ambulatory. Twelve patients were attending school. The calculated QOL scores ranged from 2 to 15. The Barthel Index (BI) ranged from 15 to 100. The QOL questionnaire score and BI were showing significant positive correlation.
Conclusions
The patients operated on for SB commonly have the neurological sequelae. The QOL score identifies the important problems in the initial years after surgery which can help in initiating and maintaining rehabilitative services in these patients. The treatment of urinary and fecal incontinence very early in life will allow these children to have a normal social and school life.
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References
Clayton DB, Brock JW 3rd, Joseph DB (2010) Urologic management of spina bifida. Dev Disabil Res Rev 16:88–95
Peacock WJ (1998) Management of spina bifida, hydrocephalus central nervous system infections and intractable epilepsy. In: O'Neill JA, Rowe MI, Grosfeld JL, Fonkalsrud MD, Coran AG (eds) Pediatric surgery, 5th edn. Mosby Year Book Inc., St. Louis, pp 1849–1858
Lorber J, Salfield S (1981) Results of selective treatment of spina bifida cystica. Arch Dis Child 56:822–830
McLone DG (1992) Continuing concepts in the management of spina bifida. Pediatr Neurosurg 18:254–256
Kirpalani HM, Parkin PC, Willen AR et al (2000) Quality of life in spina bifida: importance of parental hope. Arch Dis Child 83(4):293–297
Padua L, Rendeli C, Rabini A et al (2002) Health related quality of life and disability in young patients with spina bifida. Arch Phys Med Rehabil 83:1384–1388
Mahoney FI, Barthel DW (1965) Functional evaluation: the Barthel Index. Md State Med J 14:61–65
Chulamorkodt NN, Estrada CR, Chaviano AH (2004) Continent urinary diversion: 10-year experience of Shriners Hospitals for children in Chicago. J Spinal Cord Med 27(Suppl 1):S84–S87
Padua L, Rendeli C, Ausisli E, Aprile I, Caliandro P, Tonali P, Salvaggio E (2004) Relationship between the clinical neurophysiological pattern, disability and quality of life in adolescents with spina bifida. J Child Neurol 19:952–957
Rendeli C, Ausisli E, Tabacco F, Caliandro P, Aprile I, Tonali P, Salvaggio E, Padua L (2005) Assessment of health status in children with spina bifida. Spinal Cord 43:230–235
Blum RW, Resnick MD, Nelson R et al (1991) Family and peer issues among adolescents with spina bifida and cerebral palsy. Pediatrics 88:280
Tew B, Laurence KM, Jenkins V (1990) Factors affecting employability among young adults with spina bifida and hydrocephalus. Z Kinderchir suppl 45:34
Holmbeck GN, Devine KA (2010) Psychosocial and family functioning in spina bifida. Dev Disabil Res Rev 16:40–46
Oakeshott P, Hunt GM (2003) Long term outcome in open spina bifida. Br J Gen Pract 53:632–636
Barf HA, Post MW, Verhoef M, Jennekens-Schinkel A, Gooskens RH, Prevo AJ (2007) Life satisfaction of young adults with spina bifida. Dev Med Child Neurol 49:458–463
Barry S (2010) Quality of life and myelomeningoceole. An ethical and evidence-based analysis of the Groningen protocol. Pediatr Neurosurg 46:409–414
Snograss WT, Adams R (2004) Initial urologic management of myelomeningocele. Urol Clin N Am 31:427–434
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Rathod, K.J., Mahajan, J.K., Khan, R.A. et al. Quality of life of very young spina bifida patients after initial surgical treatment. Childs Nerv Syst 28, 883–887 (2012). https://doi.org/10.1007/s00381-012-1692-1
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DOI: https://doi.org/10.1007/s00381-012-1692-1