Advertisement

Child's Nervous System

, Volume 22, Issue 2, pp 117–124 | Cite as

Functional outcome in young adults with spina bifida and hydrocephalus

  • R. Hetherington
  • M. Dennis
  • M. Barnes
  • J. Drake
  • F. Gentili
Original Paper

Abstract

Introduction

Quality of life was studied in 31 adult survivors of spina bifida, each with Verbal or Performance IQ score over 70.

Methods

Instruments measured physical and occupational function, cognitive/psychological function, somatic sensation, and social interaction in the context of the ability to live independently.

Results

Domain group means except motor independence were in the average range (±1 standard deviation). Variability within the group with respect to physical phenotype (high spinal lesions were associated with poorer motor independence) and medical history [a greater number of shunt revisions (>4) were associated with poorer functional numeracy] was predictive of quality of life. Both spinal lesion level and number of shunt revisions influenced occupational status.

Discussion

There was a relation between everyday mathematics, reading skills, and quality of life. The consequences of the physical, medical, and cognitive effects of spina bifida extend into young adulthood and have an impact on quality of life.

Keywords

Spina bifida Hydrocephalus Quality of life 

References

  1. 1.
    Ager A (1990) The Life experiences checklist manual. NFER-NELSON Publishing Company Ltd., WindsorGoogle Scholar
  2. 2.
    Barnes MA, Pengelly S, Dennis M, Wilkinson M, Rogers T, Faulkner H (2002) Mathematics skills in good readers with hydrocephalus. J Int Neuropsychol Soc 8:72–82CrossRefPubMedGoogle Scholar
  3. 3.
    Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA (2001) Spina bifida outcome: a 25-year prospective. Pediatr Neurosurg 34:114–120CrossRefPubMedGoogle Scholar
  4. 4.
    Bruininks RH, Woodcock RW, Weatherman RF, Hill BK (1996) Scales of Independent Behavior–Revised. Riverside Publishing Company, ChicagoGoogle Scholar
  5. 5.
    Castree BJ, Walker JH (1981) The young adult with spina bifida. Br Med J 283:1040–1042Google Scholar
  6. 6.
    Cate IMP, Kennedy C, Stevenson J (2002) Disability and quality of life in children with spina bifida and hydrocephalus. Dev Med Child Neurol 44:317–322CrossRefPubMedGoogle Scholar
  7. 7.
    Del Bigio MR (1993) Neuropathological changes caused by hydrocephalus. Acta Neuropathol (Berl) 85:573–585CrossRefGoogle Scholar
  8. 8.
    Dennis M, Fitz CR, Netley CT, Sugar J, Harwood-Nash DF, Hendrick EB, Hoffman H, Humphreys R (1981) The intelligence of hydrocephalic children. Arch Neurol 38:607–715PubMedGoogle Scholar
  9. 9.
    Dennis M, Fletcher J, Rogers T, Hetherington R, Francis D (2002) Visual perception in children with spina bifida and hydrocephalus. J Int Neuropsychol Soc 8:95–106CrossRefPubMedGoogle Scholar
  10. 10.
    Dennis M, Barnes M (1993) Oral discourse after early-onset hydrocephalus: linguistic ambiguity, figurative language, speech acts, and script-based inferences. J Pediatr Psychol 18:639–652PubMedGoogle Scholar
  11. 11.
    Evans DR, Cope MA (1989) Manual for the Quality of Life Questionnaire. Multi-Health Systems, Inc., TorontoGoogle Scholar
  12. 12.
    Fletcher JM, Bohan TP, Brandt ME, Brookshire BL, Beaver SR, Francis DJ, Thompson NM, Miner ME (1992) Verbal and nonverbal skill discrepancies in hydrocephalic children. J Clin Exp Neuropsychol 14:593–609PubMedGoogle Scholar
  13. 13.
    Fletcher JM, Brookshire BL, Landry SH, Bohan T, Davidson KC, Francis DJ, Thompson NM, Milner ME (1995) Behavioral adjustment of children with hydrocephalus: relationships with etiology, neurological, and family status. J Pediatr Psychol 20:109–125PubMedGoogle Scholar
  14. 14.
    Fletcher JM, Dennis M, Northrup H (2000) Hydrocephalus. In: Yeates KM, Ris MD et al (eds) Pediatric neuropsychology: research, theory, and practice. The science and practice of neuropsychology. The Guilford Press, New York, pp 25–46Google Scholar
  15. 15.
    Harwood-Nash DCF, Fitz CR (1976) Neuroradiology in infants and children, vol 2. C.V. Mosby, St LouisGoogle Scholar
  16. 16.
    Hayden PW, Davenport SLH, Campbell MM (1979) Adolescents with myelodysplasia: impact of physical disability on emotional maturation. Pediatrics 64:53–59PubMedGoogle Scholar
  17. 17.
    Hetherington R, Dennis M (1999) Motor function profile in children with early onset hydrocephalus. Dev Neuropsychol 15:25–52Google Scholar
  18. 18.
    Hommet C, Billard C, Gillet P, Barthez, MA, Lourniere JM, Santini JJ, de Toffol B, Corcia P, Autret A (1999) Neuropsychologic and adaptive functioning in adolescents and young adults shunted for congenital hydrocephalus. J Child Neurol 14:144–150PubMedGoogle Scholar
  19. 19.
    Hunt GM (1990) Open spina bifida: outcome for a complete cohort treated unselectively and followed into adulthood. Dev Med Child Neurol 32:108–118PubMedGoogle Scholar
  20. 20.
    Hunt GM, Oakeshott P, Kerry S (1999) Links between the CSF shunt and achievement in adults with spina bifida. J Neurol Neurosurg Psychiatry 67:591–595PubMedGoogle Scholar
  21. 21.
    Kaufman AS, Kaufman NL (1994) Functional academic skills test. American Guidance Service, Circle PinesGoogle Scholar
  22. 22.
    Kennedy SE, Martine SDG, Jelley JM, Walton B, Vlcek CK, Hassanein RS, Holmes GE (1998) Identification of medical and non-medical needs of adolescents and young adults with spina bifida and their families: a preliminary study. Child Health Care 27:47–61Google Scholar
  23. 23.
    Kirpalani HM, Parkin PC, Willan AR, Fehlings DL, Rosenbaum PL, King D, Van Nie AJ (2001) Quality of life in spina bifida: importance of parental hope. Arch Dis Child 83:293–297CrossRefGoogle Scholar
  24. 24.
    Lavigne JV, Nolan D, McLone DG (1988) Temperament, coping and psychological adjustment in young children with spina bifida. J Pediatr Psychol 13:363–378PubMedGoogle Scholar
  25. 25.
    Leplége A, Hunt S (1997) The problem of quality of life in medicine. J Am Med Assoc 27:47–50CrossRefGoogle Scholar
  26. 26.
    McLaughlin JF, Shurtleff DB, Lamers JY, Stihtz JT, Hayden PW, Kroope RJ (1985) Influence of prognosis on decisions regarding the care of newborns with myelodysplasia. N Engl J Med 312:1589–1594PubMedGoogle Scholar
  27. 27.
    Moos RH, Moos BS (1994) Family environment scale manual: development, applications, research, 3rd edn. Consulting Psychologists Press, Inc., Palo AltoGoogle Scholar
  28. 28.
    Padua L, Rendeli C, Rabini A, Girardi E, Tonali P, Salvaggio E (2002) Health-related quality of life and disability in young patients with spina bifida. Arch Phys Med Rehabil 83:1384–1388CrossRefPubMedGoogle Scholar
  29. 29.
    Sawin KJ, Brei TJ, Buran CF, Fastenau PS (2002) Factors associated with quality of life in adolescents with spina bifida. J Holist Nurs 20:279–304PubMedGoogle Scholar
  30. 30.
    Schipper H, Clinch JJ, Olweny CLM (1996) Quality of life studies: definitions and conceptual issues. In: Spilker B (ed) Quality of life and pharmacoeconomics in clinical trials, 2nd edn. Lippincott-Raven, Philadelphia, pp 11–23Google Scholar
  31. 31.
    Snow JH, Prince M, Souheaver G, Ashcraft E, Stefans V, Edmonds J (1994) Neuropsychological patterns of adolescents and young adults with spina bifida. Arch Clin Neuropsychol 9:277–287CrossRefPubMedGoogle Scholar
  32. 32.
    SPSS Inc. (1999) SPSS base 10.0 for Windows user’s guide. SPSS Inc, ChicagoGoogle Scholar
  33. 33.
    Stellman-Ward G, Bannister CM, Lewis W (1993) Assessing the needs of the adult with spina bifida. Eur J Pediatr Surg 3:14–16PubMedGoogle Scholar
  34. 34.
    van Allen MI, Alousek DK, Chernoff GF, Juriloff D, Harris M, McGillivray BC, Yong S-L, Langlois S, MacLeod PM, Chitayat D, Briedman JM, Wilson RD, McFadden D, Mantzar J, Ritchie S, Hall JG (1993) Evidence for multi-site closure of the neural tube in humans. Am J Med Genet 47:723–743CrossRefPubMedGoogle Scholar
  35. 35.
    Wechsler D (1981) Wechsler Adult Intelligence Scale–Revised. The Psychological Corporation, ClevelandGoogle Scholar

Copyright information

© Springer-Verlag 2005

Authors and Affiliations

  • R. Hetherington
    • 1
  • M. Dennis
    • 1
  • M. Barnes
    • 1
  • J. Drake
    • 1
  • F. Gentili
    • 1
  1. 1.Community Health and Knowledge TransferThe Hospital for Sick ChildrenTorontoCanada

Personalised recommendations