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Quality of Life in Childhood Hydrocephalus

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Pediatric Hydrocephalus

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Abstract

Hydrocephalus is a complex disorder with broad and heterogeneous implications for children’s lives, spanning cognitive, physical, social, emotional, and psychological domains. In appreciation of this, there has hence been a shift in dogma toward developing and incorporating quality of life (QOL) and functional outcome instruments into the assessment and treatment of children with this condition. Taking a holistic approach to the patient, the present chapter focuses on QOL considerations in childhood hydrocephalus.

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References

  • Badhiwala JH, Hong CJ, Nassiri F, Hong BY, Riva-Cambrin J, Kulkarni AV (2015) Treatment of posthemorrhagic ventricular dilation in preterm infants: a systematic review and meta-analysis of outcomes and complications. J Neurosurg Pediatr 16(5):545–555. https://doi.org/10.3171/2015.3.PEDS14630.

  • Bakar EE, Bakar B, Taner YI, Akalan N (2009) Evaluation of the intellectual skill problems of hydrocephalic children: a clinical study. Turk Neurosurg 19:29–35

    PubMed  Google Scholar 

  • Barnes MA, Dennis M (1992) Reading in children and adolescents after early onset hydrocephalus and in normally developing age peers: phonological analysis, word recognition, word comprehension, and passage comprehension skill. J Pediatr Psychol 17:445–465

    Article  CAS  PubMed  Google Scholar 

  • Barnes MA, Dennis M (1998) Discourse after early-onset hydrocephalus: core deficits in children of average intelligence. Brain Lang 61:309–334

    Article  CAS  PubMed  Google Scholar 

  • Bourgeois M, Sainte-Rose C, Cinalli G, Maixner W, Malucci C, Zerah M, Pierre-Kahn A, Renier D, Hoppe-Hirsch E, Aicardi J (1999) Epilepsy in children with shunted hydrocephalus. J Neurosurg 90:274–281

    Article  CAS  PubMed  Google Scholar 

  • Casey AT, Kimmings EJ, Kleinlugtebeld AD, Taylor WA, Harkness WF, Hayward RD (1997) The long-term outlook for hydrocephalus in childhood. A ten-year cohort study of 155 patients. Pediatr Neurosurg 27:63–70

    Article  CAS  PubMed  Google Scholar 

  • Coplan J (1982) Parental estimate of child’s developmental level in a high-risk population. Am J Dis Child 136:101–104

    CAS  PubMed  Google Scholar 

  • Daltroy LH, Liang MH, Fossel AH, Goldberg MJ (1998) The POSNA pediatric musculoskeletal functional health questionnaire: report on reliability, validity, and sensitivity to change. Pediatric Outcomes Instrument Development Group. Pediatric Orthopaedic Society of North America. J Pediatr Orthop 18:561–571

    Article  CAS  PubMed  Google Scholar 

  • Dennis M, Barnes MA (1993) Oral discourse after early-onset hydrocephalus: linguistic ambiguity, figurative language, speech acts, and script-based inferences. J Pediatr Psychol 18:639–652

    Article  CAS  PubMed  Google Scholar 

  • Dennis M, Jacennik B, Barnes MA (1994) The content of narrative discourse in children and adolescents after early-onset hydrocephalus and in normally developing age peers. Brain Lang 46:129–165

    Article  CAS  PubMed  Google Scholar 

  • Dennis M, Barnes MA, Hetherington CR (1999) Congenital hydrocephalus as a model of neurodevelopmental disorder. MIT, Cambridge

    Google Scholar 

  • Donders J, Canady AI, Rourke BP (1990) Psychometric intelligence after infantile hydrocephalus. A critical review and reinterpretation. Childs Nerv Syst 6:148–154

    Article  CAS  PubMed  Google Scholar 

  • Donders J, Rourke BP, Canady AI (1992) Emotional adjustment of children with hydrocephalus and of their parents. J Child Neurol 7:375–380

    Article  CAS  PubMed  Google Scholar 

  • Drake JM, Canadian Pediatric Neurosurgery Study Group (2007) Endoscopic third ventriculostomy in pediatric patients: the Canadian experience. Neurosurgery 60:881–886; discussion 881–886

    Article  PubMed  Google Scholar 

  • Drake JM, Kestle JR, Milner R, Cinalli G, Boop F, Piatt J Jr, Haines S, Schiff SJ, Cochrane DD, Steinbok P, MacNeil N (1998) Randomized trial of cerebrospinal fluid shunt valve design in pediatric hydrocephalus. Neurosurgery 43:294–303; discussion 303–305

    Article  CAS  PubMed  Google Scholar 

  • Drake JM, Kulkarni AV, Kestle J (2009) Endoscopic third ventriculostomy versus ventriculoperitoneal shunt in pediatric patients: a decision analysis. Childs Nerv Syst 25:467–472

    Article  PubMed  Google Scholar 

  • Drake JM, Riva-Cambrin J, Jea A, Auguste K, Tamber M, Lamberti-Pasculli M (2010) Prospective surveillance of complications in a pediatric neurosurgery unit. J Neurosurg Pediatr 5:544–548

    Article  PubMed  Google Scholar 

  • EuroQol G (1990) EuroQol – a new facility for the measurement of health-related quality of life. Health Policy 16:199–208

    Article  Google Scholar 

  • Feeny D, Furlong W, Saigal S, Sun J (2004) Comparing directly measured standard gamble scores to HUI2 and HUI3 utility scores: group- and individual-level comparisons. Soc Sci Med 58:799–809

    Article  PubMed  Google Scholar 

  • Fernell E, Gillberg C, von Wendt L (1991) Behavioural problems in children with infantile hydrocephalus. Dev Med Child Neurol 33:388–395

    Article  CAS  PubMed  Google Scholar 

  • Fernell E, Hagberg G, Hagberg B (1994) Infantile hydrocephalus epidemiology: an indicator of enhanced survival. Arch Dis Child Fetal Neonatal Ed 70:F123–F128

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Fletcher JM, Brookshire BL, Bohan TP, Brandt ME, Davidson KC (1995a) Syndrome of nonverbal learning disabilities: neurodevelopmental manifestations. Guilford, New York

    Google Scholar 

  • Fletcher JM, Brookshire BL, Landry SH, Bohan TP, Davidson KC, Francis DJ, Thompson NM, Miner ME (1995b) Behavioral adjustment of children with hydrocephalus: relationships with etiology, neurological, and family status. J Pediatr Psychol 20:109–125

    Article  CAS  PubMed  Google Scholar 

  • Fletcher JM, Landry SH, Bohan TP, Davidson KC, Brookshire BL, Lachar D, Kramer LA, Francis DJ (1997) Effects of intraventricular hemorrhage and hydrocephalus on the long-term neurobehavioral development of preterm very-low-birthweight infants. Dev Med Child Neurol 39:596–606

    Article  CAS  PubMed  Google Scholar 

  • Furlong W, Feeny D, Torrance GW, Goldsmith CH, Depauw S, Zhu Z, Denton M, Boyle M (1998) Multiplicative multi-attribute utility function for the Health Utilities Index Mark 3 (HUI3) system: a technical report. McMaster University Centre for Health Economics and Policy Analysis working paper 98-11. McMaster University Centre for Health Economics and Policy Analysis, Hamilton

    Google Scholar 

  • Furlong WJ, Feeny DH, Torrance GW, Barr RD (2001) The Health Utilities Index (HUI) system for assessing health-related quality of life in clinical studies. Ann Med 33:375–384

    Article  CAS  PubMed  Google Scholar 

  • Glaser AW, Davies K, Walker D, Brazier D (1997) Influence of proxy respondents and mode of administration on health status assessment following central nervous system tumours in childhood. Qual Life Res 6:43–53

    Article  CAS  PubMed  Google Scholar 

  • Goodman R, Meltzer H, Bailey V (1998) The Strengths and Difficulties Questionnaire: a pilot study on the validity of the self-report version. Eur Child Adolesc Psychiatry 7:125–130

    Article  CAS  PubMed  Google Scholar 

  • Gupta N, Park J, Solomon C, Kranz DA, Wrensch M, Wu YW (2007) Long-term outcomes in patients with treated childhood hydrocephalus. J Neurosurg 106:334–339

    PubMed  Google Scholar 

  • Hoppe-Hirsch E, Laroussinie F, Brunet L, Sainte-Rose C, Renier D, Cinalli G, Zerah M, Pierre-Kahn A (1998) Late outcome of the surgical treatment of hydrocephalus. Childs Nerv Syst 14:97–99

    Article  CAS  PubMed  Google Scholar 

  • James HE, Nowak TP (1991) Clinical course and diagnosis of migraine headaches in hydrocephalic children. Pediatr Neurosurg 17:310–316; discussion 316

    Article  PubMed  Google Scholar 

  • Jeng S, Gupta N, Wrensch M, Zhao S, Wu YW (2011) Prevalence of congenital hydrocephalus in California, 1991–2000. Pediatr Neurol 45:67–71

    Article  PubMed  Google Scholar 

  • Jones HC, Klinge PM (2008) Hydrocephalus 2008, 17–20th September, Hannover Germany: a conference report. Cerebrospinal Fluid Res 5:19

    Article  PubMed  PubMed Central  Google Scholar 

  • Kahle KT, Kulkarni AV, Limbrick DD Jr, Warf BC (2016) Hydrocephalus in children. Lancet 387:788–799

    Article  PubMed  Google Scholar 

  • Kestle JR, Drake JM, Cochrane DD, Milner R, Walker ML, Abbott R 3rd, Boop FA, Endoscopic Shunt Insertion Trial Participants (2003) Lack of benefit of endoscopic ventriculoperitoneal shunt insertion: a multicenter randomized trial. J Neurosurg 98:284–290

    Article  PubMed  Google Scholar 

  • Kotsopoulos S, Walker S, Copping W, Cote A, Stavrakaki C (1994) Parent-rating and self-report measures in the psychiatric assessment of adolescents. Adolescence 29:653–663

    CAS  PubMed  Google Scholar 

  • Kulkarni AV (2006) Distribution-based and anchor-based approaches provided different interpretability estimates for the Hydrocephalus Outcome Questionnaire. J Clin Epidemiol 59:176–184

    Article  PubMed  Google Scholar 

  • Kulkarni AV, Shams I (2007) Quality of life in children with hydrocephalus: results from the Hospital for Sick Children, Toronto. J Neurosurg 107:358–364

    PubMed  Google Scholar 

  • Kulkarni AV, Drake JM, Lamberti-Pasculli M (2001) Cerebrospinal fluid shunt infection: a prospective study of risk factors. J Neurosurg 94:195–201

    Article  CAS  PubMed  Google Scholar 

  • Kulkarni AV, Drake JM, Rabin D, Dirks PB, Humphreys RP, Rutka JT (2004a) Measuring the health status of children with hydrocephalus by using a new outcome measure. J Neurosurg 101:141–146

    PubMed  Google Scholar 

  • Kulkarni AV, Rabin D, Drake JM (2004b) An instrument to measure the health status in children with hydrocephalus: the Hydrocephalus Outcome Questionnaire. J Neurosurg 101:134–140

    PubMed  Google Scholar 

  • Kulkarni AV, Cochrane DD, McNeely PD, Shams I (2008a) Comparing children’s and parents’ perspectives of health outcome in paediatric hydrocephalus. Dev Med Child Neurol 50:587–592

    Article  PubMed  Google Scholar 

  • Kulkarni AV, Cochrane DD, McNeely PD, Shams I (2008b) Medical, social, and economic factors associated with health-related quality of life in Canadian children with hydrocephalus. J Pediatr 153:689–695

    Article  PubMed  Google Scholar 

  • Kulkarni AV, Drake JM, Mallucci CL, Sgouros S, Roth J, Constantini S, Canadian Pediatric Neurosurgery Study Group (2009) Endoscopic third ventriculostomy in the treatment of childhood hydrocephalus. J Pediatr 155:254–259.e1

    Article  PubMed  Google Scholar 

  • Kulkarni AV, Hui S, Shams I, Donnelly R (2010a) Quality of life in obstructive hydrocephalus: endoscopic third ventriculostomy compared to cerebrospinal fluid shunt. Childs Nerv Syst 26:75–79

    Article  PubMed  Google Scholar 

  • Kulkarni AV, Shams I, Cochrane DD, McNeely PD (2010b) Quality of life after endoscopic third ventriculostomy and cerebrospinal fluid shunting: an adjusted multivariable analysis in a large cohort. J Neurosurg Pediatr 6:11–16

    Article  PubMed  Google Scholar 

  • Kulkarni AV, Donnelly R, Shams I (2011) Comparison of Hydrocephalus Outcome Questionnaire scores to neuropsychological test performance in school-aged children. J Neurosurg Pediatr 8:396–401

    Article  PubMed  Google Scholar 

  • Kulkarni AV, Riva-Cambrin J, Browd SR, Drake JM, Holubkov R, Kestle JR, Limbrick DD, Rozzelle CJ, Simon TD, Tamber MS, Wellons JC 3rd, Whitehead WE, Hydrocephalus Clinical Research Network (2014) Endoscopic third ventriculostomy and choroid plexus cauterization in infants with hydrocephalus: a retrospective Hydrocephalus Clinical Research Network study. J Neurosurg Pediatr 14:224–229

    Article  PubMed  Google Scholar 

  • Kulkarni AV, Donnelly R, Mabbott DJ, Widjaja E (2015) Relationship between ventricular size, white matter injury, and neurocognition in children with stable, treated hydrocephalus. J Neurosurg Pediatr 16:267–274

    Article  PubMed  Google Scholar 

  • Kutscher A, Nestler U, Bernhard MK, Merkenschlager A, Thome U, Kiess W, Schob S, Meixensberger J, Preuss M (2015) Adult long-term health-related quality of life of congenital hydrocephalus patients. J Neurosurg Pediatr 16:621–625

    Article  PubMed  Google Scholar 

  • Lacy M, Pyykkonen BA, Hunter SJ, Do T, Oliveira M, Austria E, Mottlow D, Larson E, Frim D (2008) Intellectual functioning in children with early shunted posthemorrhagic hydrocephalus. Pediatr Neurosurg 44:376–381

    Article  PubMed  Google Scholar 

  • Last JM, Abramson JH (1995) A dictionary of epidemiology. Oxford University Press, New York

    Google Scholar 

  • Lindquist B, Carlsson G, Persson EK, Uvebrant P (2005) Learning disabilities in a population-based group of children with hydrocephalus. Acta Paediatr 94:878–883

    Article  PubMed  Google Scholar 

  • Lindquist B, Persson EK, Uvebrant P, Carlsson G (2008) Learning, memory and executive functions in children with hydrocephalus. Acta Paediatr 97:596–601

    Article  PubMed  Google Scholar 

  • Lindquist B, Fernell E, Persson EK, Uvebrant P (2014) Quality of life in adults treated in infancy for hydrocephalus. Childs Nerv Syst 30:1413–1418

    Article  PubMed  PubMed Central  Google Scholar 

  • Mandell JG, Kulkarni AV, Warf BC, Schiff SJ (2015) Volumetric brain analysis in neurosurgery: Part 2. Brain and CSF volumes discriminate neurocognitive outcomes in hydrocephalus. J Neurosurg Pediatr 15:125–132

    Article  PubMed  Google Scholar 

  • Mittmann N, Trakas K, Risebrough N, Liu BA (1999) Utility scores for chronic conditions in a community-dwelling population. Pharmacoeconomics 15:369–376

    Article  CAS  PubMed  Google Scholar 

  • Msall ME, Digaudio K, Rogers BT, LaForest S, Catanzaro NL, Campbell J, Wilczenski F, Duffy LC (1994) The Functional Independence Measure for Children (WeeFIM). Conceptual basis and pilot use in children with developmental disabilities. Clin Pediatr (Phila) 33:421–430

    Article  CAS  Google Scholar 

  • Noetzel MJ, Blake JN (1992) Seizures in children with congenital hydrocephalus: long-term outcome. Neurology 42:1277–1281

    Article  CAS  PubMed  Google Scholar 

  • Oakes WJ (2007) Long-term outcomes of hydrocephalus. J Neurosurg 106:333; discussion 333

    PubMed  Google Scholar 

  • Patrick DL, Deyo RA (1989) Generic and disease-specific measures in assessing health status and quality of life. Med Care 27:S217–S232

    Article  CAS  PubMed  Google Scholar 

  • Paulsen AH, Lundar T, Lindegaard KF (2015) Pediatric hydrocephalus: 40-year outcomes in 128 hydrocephalic patients treated with shunts during childhood. Assessment of surgical outcome, work participation, and health-related quality of life. J Neurosurg Pediatr 16:633–641

    Article  PubMed  Google Scholar 

  • Persson EK, Anderson S, Wiklund LM, Uvebrant P (2007) Hydrocephalus in children born in 1999–2002: epidemiology, outcome and ophthalmological findings. Childs Nerv Syst 23:1111–1118

    Article  PubMed  Google Scholar 

  • Peters NJ, Mahajan JK, Bawa M, Sahu PK, Rao KL (2014) Factors affecting quality of life in early childhood in patients with congenital hydrocephalus. Childs Nerv Syst 30:867–871

    Article  PubMed  Google Scholar 

  • Piatt JH Jr, Carlson CV (1996) Hydrocephalus and epilepsy: an actuarial analysis. Neurosurgery 39:722–727; discussion 727–728

    Article  PubMed  Google Scholar 

  • Pless CE, Pless IB (1995) How well they remember. The accuracy of parent reports. Arch Pediatr Adolesc Med 149:553–558

    Article  CAS  PubMed  Google Scholar 

  • Raat H, Botterweck AM, Landgraf JM, Hoogeveen WC, Essink-Bot ML (2005) Reliability and validity of the short form of the child health questionnaire for parents (CHQ-PF28) in large random school based and general population samples. J Epidemiol Community Health 59:75–82

    Article  PubMed  PubMed Central  Google Scholar 

  • Rekate HL, Kranz D (2009) Headaches in patients with shunts. Semin Pediatr Neurol 16:27–30

    Article  PubMed  Google Scholar 

  • Riva-Cambrin J, Kestle JR, Holubkov R, Butler J, Kulkarni AV, Drake J, Whitehead WE, Wellons JC 3rd, Shannon CN, Tamber MS, Limbrick DD Jr, Rozzelle C, Browd SR, Simon TD, Hydrocephalus Clinical Research Network (2016) Risk factors for shunt malfunction in pediatric hydrocephalus: a multicenter prospective cohort study. J Neurosurg Pediatr 17:382–390

    Article  PubMed  Google Scholar 

  • Saigal S, Feeny D, Rosenbaum P, Furlong W, Burrows E, Stoskopf B (1996) Self-perceived health status and health-related quality of life of extremely low-birth-weight infants at adolescence. JAMA 276:453–459

    Article  CAS  PubMed  Google Scholar 

  • Sgouros S, Kulkharni AV, Constantini S (2006) The International Infant Hydrocephalus Study: concept and rational. Childs Nerv Syst 22:338–345

    Article  CAS  PubMed  Google Scholar 

  • Stellman-Ward GR, Bannister CM, Lewis MA, Shaw J (1997) The incidence of chronic headache in children with shunted hydrocephalus. Eur J Pediatr Surg 7(Suppl 1):12–14

    Article  PubMed  Google Scholar 

  • Stokes J 3rd, Noren J, Shindell S (1982) Definition of terms and concepts applicable to clinical preventive medicine. J Community Health 8:33–41

    Article  PubMed  Google Scholar 

  • Sumpter R, Dorris L, Brannan G, Carachi R (2012) Quality of life and behavioural adjustment in childhood hydrocephalus. Scott Med J 57:18–25

    Article  CAS  PubMed  Google Scholar 

  • Thompson NM, Fletcher JM, Chapieski L, Landry SH, Miner ME, Bixby J (1991) Cognitive and motor abilities in preschool hydrocephalics. J Clin Exp Neuropsychol 13:245–258

    Article  CAS  PubMed  Google Scholar 

  • Topczewska-Lach E, Lenkiewicz T, Olanski W, Zaborska A (2005) Quality of life and psychomotor development after surgical treatment of hydrocephalus. Eur J Pediatr Surg 15:2–5

    Article  CAS  PubMed  Google Scholar 

  • van Lindert EJ, Delye H, Leonardo J (2014) Prospective review of a single center’s general pediatric neurosurgical intraoperative and postoperative complication rates. J Neurosurg Pediatr 13:107–113

    Article  PubMed  Google Scholar 

  • Varni JW, Seid M, Rode CA (1999) The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 37:126–139

    Article  CAS  PubMed  Google Scholar 

  • Vinchon M, Rekate H, Kulkarni AV (2012) Pediatric hydrocephalus outcomes: a review. Fluids Barriers CNS 9:18

    Article  PubMed  PubMed Central  Google Scholar 

  • Ware JE Jr, Sherbourne CD (1992) The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 30:473–483

    Article  PubMed  Google Scholar 

  • Warf B, Ondoma S, Kulkarni A, Donnelly R, Ampeire M, Akona J, Kabachelor CR, Mulondo R, Nsubuga BK (2009) Neurocognitive outcome and ventricular volume in children with myelomeningocele treated for hydrocephalus in Uganda. J Neurosurg Pediatr 4:564–570

    Article  PubMed  Google Scholar 

  • WHO (1984) Health promotion: a discussion document on the concept and principles. WHO Regional Office for Europe, Copenhagen

    Google Scholar 

  • Wilkinson GS (1993) Wide range achievement test 3 administration manual. Wide Range, Wilmington

    Google Scholar 

  • Williams VJ, Juranek J, Stuebing KK, Cirino PT, Dennis M, Bowman RM, Blaser S, Kramer LA, Fletcher JM (2015) Postshunt lateral ventricular volume, white matter integrity, and intellectual outcomes in spina bifida and hydrocephalus. J Neurosurg Pediatr 15:410–419

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Division of Neurosurgery, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada

    Jetan H. Badhiwala, Farshad Nassiri & Abhaya V. Kulkarni

Authors
  1. Jetan H. Badhiwala
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  2. Farshad Nassiri
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  3. Abhaya V. Kulkarni
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Correspondence to Abhaya V. Kulkarni .

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Editors and Affiliations

  1. Pediatric Neurosurgery, Santobono Pausilipon Children’s Hospital, Naples, Italy

    Giuseppe Cinalli

  2. Division of Pediatric Neurosurgery, Acıbadem University, School of Medicine, Istanbul, Turkey

    M. Memet Özek

  3. Pediatric Neurosurgery, Hôpital Necker-Enfants Malades Université René Descartes-Paris V, Paris, France

    Christian Sainte-Rose

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Badhiwala, J.H., Nassiri, F., Kulkarni, A.V. (2019). Quality of Life in Childhood Hydrocephalus. In: Cinalli, G., Özek, M., Sainte-Rose, C. (eds) Pediatric Hydrocephalus. Springer, Cham. https://doi.org/10.1007/978-3-319-27250-4_87

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  • DOI: https://doi.org/10.1007/978-3-319-27250-4_87

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