Skip to main content
Erschienen in: Journal of Medicine and the Person 3/2012

01.12.2012 | Issues in International Public Health

Interdisciplinary care for children with spina bifida in East and Southern Africa

verfasst von: Pierre Mertens, Femke Bannink

Erschienen in: Journal of Medicine and the Person | Ausgabe 3/2012

Einloggen, um Zugang zu erhalten

Abstract

The prevalence of newborns spina bifida and hydrocephalus in low and middle income economies (LMIE) is higher than in high income economies (HIE). In this article, the International Federation for Spina Bifida and Hydrocephalus (IF) reflects on its findings of 20 years of work in East and Southern Africa. Active parent involvement in care and interdisciplinary approach are crucial for a successful long life care program. In LMIE, the IF program tries to overcome the barriers in care. Medical and local materials have to be used creatively and have to be combined with pragmatic choices in surgery and medical imaging. The IF program shows how a cost-saving approach is feasible and does not need to imply a decrease in quality of care.
Literatur
1.
Zurück zum Zitat Warf B, Ondoma S, Kulkarni A, Donnelly R, Ampeire M, Akona J et al (2009) Neurocognitive outcome and ventricular volume in children with myelomeningocele treated for hydrocephalus in Uganda. J Neurosurg Pediatrics 4(6):564–570 [Epub 2009/12/03]CrossRef Warf B, Ondoma S, Kulkarni A, Donnelly R, Ampeire M, Akona J et al (2009) Neurocognitive outcome and ventricular volume in children with myelomeningocele treated for hydrocephalus in Uganda. J Neurosurg Pediatrics 4(6):564–570 [Epub 2009/12/03]CrossRef
2.
Zurück zum Zitat Verpoorten C, Buyse GM (2008) The neurogenic bladder: medical treatment. Pediatr Nephrol 23(5):717–725 [Epub 2007/12/21]PubMedCrossRef Verpoorten C, Buyse GM (2008) The neurogenic bladder: medical treatment. Pediatr Nephrol 23(5):717–725 [Epub 2007/12/21]PubMedCrossRef
3.
Zurück zum Zitat Thompson DN (2009) Postnatal management and outcome for neural tube defects including spina bifida and encephalocoeles. Prenat Diagn 29(4):412–419 [Epub 2009/02/06]PubMedCrossRef Thompson DN (2009) Postnatal management and outcome for neural tube defects including spina bifida and encephalocoeles. Prenat Diagn 29(4):412–419 [Epub 2009/02/06]PubMedCrossRef
4.
Zurück zum Zitat Warf BC (2005) Comparison of 1-year outcomes for the Chhabra and Codman–Hakim micro precision shunt systems in Uganda: a prospective study in 195 children. J Neurosurg 102(4 Suppl):358–362 [Epub 2005/06/02]PubMed Warf BC (2005) Comparison of 1-year outcomes for the Chhabra and Codman–Hakim micro precision shunt systems in Uganda: a prospective study in 195 children. J Neurosurg 102(4 Suppl):358–362 [Epub 2005/06/02]PubMed
5.
Zurück zum Zitat O’Brien DF, Javadpour M, Collins DR, Spennato P, Mallucci CL (2005) Endoscopic third ventriculostomy: an outcome analysis of primary cases and procedures performed after ventriculoperitoneal shunt malfunction. J Neurosurg 103(5 Suppl):393–400 [Epub 2005/11/24]PubMed O’Brien DF, Javadpour M, Collins DR, Spennato P, Mallucci CL (2005) Endoscopic third ventriculostomy: an outcome analysis of primary cases and procedures performed after ventriculoperitoneal shunt malfunction. J Neurosurg 103(5 Suppl):393–400 [Epub 2005/11/24]PubMed
6.
Zurück zum Zitat Alatise OI, Adeolu AA, Komolafe EO, Adejuyigbe O, Sowande OA (2006) Pattern and factors affecting management outcome of spina bifida cystica in Ile-Ife, Nigeria. Pediatric Neurosurg 42(5):277–283 [Epub 2006/08/12]CrossRef Alatise OI, Adeolu AA, Komolafe EO, Adejuyigbe O, Sowande OA (2006) Pattern and factors affecting management outcome of spina bifida cystica in Ile-Ife, Nigeria. Pediatric Neurosurg 42(5):277–283 [Epub 2006/08/12]CrossRef
7.
Zurück zum Zitat Miles M (2006) Children with spina bifida and hydrocephalus in Africa: can medical, family and community resources improve the life chances? Disabil Soc 17:15 Miles M (2006) Children with spina bifida and hydrocephalus in Africa: can medical, family and community resources improve the life chances? Disabil Soc 17:15
8.
Zurück zum Zitat Frey L, Hauser WA (2003) Epidemiology of neural tube defects. Epilepsia 44(Suppl 3):4–13 [Epub 2003/06/07]PubMedCrossRef Frey L, Hauser WA (2003) Epidemiology of neural tube defects. Epilepsia 44(Suppl 3):4–13 [Epub 2003/06/07]PubMedCrossRef
9.
Zurück zum Zitat Shaer CM, Chescheir N, Schulkin J (2007) Myelomeningocele: a review of the epidemiology, genetics, risk factors for conception, prenatal diagnosis, and prognosis for affected individuals. Obstetr Gynecol Surv 62(7):471–479 [Epub 2007/06/19]CrossRef Shaer CM, Chescheir N, Schulkin J (2007) Myelomeningocele: a review of the epidemiology, genetics, risk factors for conception, prenatal diagnosis, and prognosis for affected individuals. Obstetr Gynecol Surv 62(7):471–479 [Epub 2007/06/19]CrossRef
10.
Zurück zum Zitat Persson EK, Anderson S, Wiklund LM, Uvebrant P (2007) Hydrocephalus in children born in 1999–2002: epidemiology, outcome and ophthalmological findings. Child’s Nerv Syst Off J Int Soc Pediatr Neurosurg 23(10):1111–1118 [Epub 2007/04/13] Persson EK, Anderson S, Wiklund LM, Uvebrant P (2007) Hydrocephalus in children born in 1999–2002: epidemiology, outcome and ophthalmological findings. Child’s Nerv Syst Off J Int Soc Pediatr Neurosurg 23(10):1111–1118 [Epub 2007/04/13]
12.
Zurück zum Zitat Kinasha AD, Manji K (2002) The incidence and pattern of neural tube defects in Dar es Salaam, Tanzania. Eur J Pediatr Surg Off J Austrian Assoc Pediatr Surg 12(Suppl 1):S38–S39 [Epub 2003/02/15], Zeitschrift fur Kinderchirurgie Kinasha AD, Manji K (2002) The incidence and pattern of neural tube defects in Dar es Salaam, Tanzania. Eur J Pediatr Surg Off J Austrian Assoc Pediatr Surg 12(Suppl 1):S38–S39 [Epub 2003/02/15], Zeitschrift fur Kinderchirurgie
13.
Zurück zum Zitat Zhu L, Ling H (2008) National neural tube defects prevention program in China. Food Nutr Bull 29(2 Suppl):S196–S204 [Epub 2008/08/20]PubMed Zhu L, Ling H (2008) National neural tube defects prevention program in China. Food Nutr Bull 29(2 Suppl):S196–S204 [Epub 2008/08/20]PubMed
14.
Zurück zum Zitat Airede KI (1992) Neural tube defects in the middle belt of Nigeria. J Trop Pediatrics 38(1):27–30 [Epub 1992/02/01]CrossRef Airede KI (1992) Neural tube defects in the middle belt of Nigeria. J Trop Pediatrics 38(1):27–30 [Epub 1992/02/01]CrossRef
15.
Zurück zum Zitat (2011) IF Annual Program Reporting Statistics Uganda, Kenia, Tanzania, Malawi, Zambia, and Sudan (2011) IF Annual Program Reporting Statistics Uganda, Kenia, Tanzania, Malawi, Zambia, and Sudan
16.
Zurück zum Zitat Warf BC, Campbell JW (2008) Combined endoscopic third ventriculostomy and choroid plexus cauterization as primary treatment of hydrocephalus for infants with myelomeningocele: long-term results of a prospective intent-to-treat study in 115 East African infants. J Neurosurg Pediatrics 2(5):310–316 [Epub 2008/11/04]CrossRef Warf BC, Campbell JW (2008) Combined endoscopic third ventriculostomy and choroid plexus cauterization as primary treatment of hydrocephalus for infants with myelomeningocele: long-term results of a prospective intent-to-treat study in 115 East African infants. J Neurosurg Pediatrics 2(5):310–316 [Epub 2008/11/04]CrossRef
17.
Zurück zum Zitat Kieckhefer GM, Trahms CM (2000) Supporting development of children with chronic conditions: from compliance toward shared management. Pediatr Nurs 26(4):354–363 [Epub 2002/05/25]PubMed Kieckhefer GM, Trahms CM (2000) Supporting development of children with chronic conditions: from compliance toward shared management. Pediatr Nurs 26(4):354–363 [Epub 2002/05/25]PubMed
18.
Zurück zum Zitat Gall C, Kingsnorth S, Healy H (2006) Growing up ready: a shared management approach. Phys Occup Therapy Pediatrics 26(4):47–62 [Epub 2006/12/01] Gall C, Kingsnorth S, Healy H (2006) Growing up ready: a shared management approach. Phys Occup Therapy Pediatrics 26(4):47–62 [Epub 2006/12/01]
19.
Zurück zum Zitat Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD (2006) Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev. 2006(3):CD004563 [Epub 2006/07/21] Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD (2006) Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev. 2006(3):CD004563 [Epub 2006/07/21]
20.
Zurück zum Zitat Bannink F, Van Hove G (2012) Progress Report on the Study “Quality of Life of Children with spina bifida and hydrocephalus and their Parents in Uganda; pre-liminary findings of 130 children”. Ghent University, Belgium Bannink F, Van Hove G (2012) Progress Report on the Study “Quality of Life of Children with spina bifida and hydrocephalus and their Parents in Uganda; pre-liminary findings of 130 children”. Ghent University, Belgium
21.
Zurück zum Zitat Werner D, Thuman C, Maxwell J (1992) Where there is no doctor: a village health care handbook, vol 29. Revised edition. Hesperian Foundation, Palo Alto Werner D, Thuman C, Maxwell J (1992) Where there is no doctor: a village health care handbook, vol 29. Revised edition. Hesperian Foundation, Palo Alto
22.
Zurück zum Zitat Werner D (1987) Disabled village children: a guide for community health workers, rehabilitation workers, and families, vol A1–12, 1st edn. Hesperian Foundation, Palo Alto Werner D (1987) Disabled village children: a guide for community health workers, rehabilitation workers, and families, vol A1–12, 1st edn. Hesperian Foundation, Palo Alto
23.
Zurück zum Zitat Munyi N, Poenaru D, Bransford R, Albright L (2009) Encephalocele—a single institution African experience. East Afr Med J 86(2):51–54 [Epub 2009/11/10]PubMed Munyi N, Poenaru D, Bransford R, Albright L (2009) Encephalocele—a single institution African experience. East Afr Med J 86(2):51–54 [Epub 2009/11/10]PubMed
24.
Zurück zum Zitat Adeloye A (2001) Management of infantile hydrocephalus in Central Africa. Trop Doct 31(2):67–70 [Epub 2001/04/26]PubMed Adeloye A (2001) Management of infantile hydrocephalus in Central Africa. Trop Doct 31(2):67–70 [Epub 2001/04/26]PubMed
26.
Zurück zum Zitat Bauer SB, Joseph DB (1990) Management of the obstructed urinary tract associated with neurogenic bladder dysfunction. Urol Clin North Am 17(2):395–406 [Epub 1990/05/01]PubMed Bauer SB, Joseph DB (1990) Management of the obstructed urinary tract associated with neurogenic bladder dysfunction. Urol Clin North Am 17(2):395–406 [Epub 1990/05/01]PubMed
27.
Zurück zum Zitat Schlager TA, Clark M, Anderson S (2001) Effect of a single-use sterile catheter for each void on the frequency of bacteriuria in children with neurogenic bladder on intermittent catheterization for bladder emptying. Pediatrics 108(4):E71 [Epub 2001/10/03]PubMedCrossRef Schlager TA, Clark M, Anderson S (2001) Effect of a single-use sterile catheter for each void on the frequency of bacteriuria in children with neurogenic bladder on intermittent catheterization for bladder emptying. Pediatrics 108(4):E71 [Epub 2001/10/03]PubMedCrossRef
28.
Zurück zum Zitat Dik P, Klijn AJ, van Gool JD, de Jong-de Vos van Steenwijk CC, de Jong TP (2006) Early start to therapy preserves kidney function in spina bifida patients. Eur Urol 49(5):908–913 [Epub 2006/02/07]PubMedCrossRef Dik P, Klijn AJ, van Gool JD, de Jong-de Vos van Steenwijk CC, de Jong TP (2006) Early start to therapy preserves kidney function in spina bifida patients. Eur Urol 49(5):908–913 [Epub 2006/02/07]PubMedCrossRef
29.
Zurück zum Zitat Warf BC, Wright EJ, Kulkarni AV (2011) Factors affecting survival of infants with myelomeningocele in southeastern Uganda. J Neurosurg Pediatrics. 7(2):127–133 [Epub 2011/02/03]CrossRef Warf BC, Wright EJ, Kulkarni AV (2011) Factors affecting survival of infants with myelomeningocele in southeastern Uganda. J Neurosurg Pediatrics. 7(2):127–133 [Epub 2011/02/03]CrossRef
30.
Zurück zum Zitat Hoeman SP (1997) Primary care for children with spina bifida. Nurse Pract 22(9):60–62, 5–72 [Epub 1997/10/06] Hoeman SP (1997) Primary care for children with spina bifida. Nurse Pract 22(9):60–62, 5–72 [Epub 1997/10/06]
32.
Zurück zum Zitat Warf BC (2011) Hydrocephalus associated with neural tube defects: characteristics, management, and outcome in sub-Saharan Africa. Child Nerv Syst Off J Int Soc Pediatr Neurosurg 27(10):1589–1594 [Epub 2011/09/20] Warf BC (2011) Hydrocephalus associated with neural tube defects: characteristics, management, and outcome in sub-Saharan Africa. Child Nerv Syst Off J Int Soc Pediatr Neurosurg 27(10):1589–1594 [Epub 2011/09/20]
33.
Zurück zum Zitat Behjati S, Emami-Naeini P, Nejat F, El Khashab M (2011) Incidence of hydrocephalus and the need to ventriculoperitoneal shunting in premature infants with intraventricular hemorrhage: risk factors and outcome. Child Nerv Syst Off J Int Soc Pediatr Neurosurg 27(6):985–989 [Epub 2011/01/15] Behjati S, Emami-Naeini P, Nejat F, El Khashab M (2011) Incidence of hydrocephalus and the need to ventriculoperitoneal shunting in premature infants with intraventricular hemorrhage: risk factors and outcome. Child Nerv Syst Off J Int Soc Pediatr Neurosurg 27(6):985–989 [Epub 2011/01/15]
34.
Zurück zum Zitat Warf BC (2005) Hydrocephalus in Uganda: the predominance of infectious origin and primary management with endoscopic third ventriculostomy. J Neurosurg 102(1 Suppl):1–15 [Epub 2005/10/07]PubMed Warf BC (2005) Hydrocephalus in Uganda: the predominance of infectious origin and primary management with endoscopic third ventriculostomy. J Neurosurg 102(1 Suppl):1–15 [Epub 2005/10/07]PubMed
35.
Zurück zum Zitat Warf BC, Stagno V, Mugamba J (2011) Encephalocele in Uganda: ethnic distinctions in lesion location, endoscopic management of hydrocephalus, and survival in 110 consecutive children. J Neurosurg Pediatrics 7(1):88–93 [Epub 2011/01/05]CrossRef Warf BC, Stagno V, Mugamba J (2011) Encephalocele in Uganda: ethnic distinctions in lesion location, endoscopic management of hydrocephalus, and survival in 110 consecutive children. J Neurosurg Pediatrics 7(1):88–93 [Epub 2011/01/05]CrossRef
36.
Zurück zum Zitat Warf BC, Alkire BC, Bhai S, Hughes C, Schiff SJ, Vincent JR et al (2011) Costs and benefits of neurosurgical intervention for infant hydrocephalus in sub-Saharan Africa. J Neurosurg Pediatrics. 8(5):509–521 [Epub 2011/11/03]CrossRef Warf BC, Alkire BC, Bhai S, Hughes C, Schiff SJ, Vincent JR et al (2011) Costs and benefits of neurosurgical intervention for infant hydrocephalus in sub-Saharan Africa. J Neurosurg Pediatrics. 8(5):509–521 [Epub 2011/11/03]CrossRef
37.
Zurück zum Zitat Bradley WG, Golding SG, Herold CJ, Hricak H, Krestin GP, Lewin JS, Miller JC, Ringertz HG, Thrall JH (2009) Globalization of P4 medicine: predictive, personalized, preemptive, and participatory—summary of the proceedings of the Eighth International Symposium of the International Society for Strategic Studies in Radiology, August 27–29, 2009 Bradley WG, Golding SG, Herold CJ, Hricak H, Krestin GP, Lewin JS, Miller JC, Ringertz HG, Thrall JH (2009) Globalization of P4 medicine: predictive, personalized, preemptive, and participatory—summary of the proceedings of the Eighth International Symposium of the International Society for Strategic Studies in Radiology, August 27–29, 2009
Metadaten
Titel
Interdisciplinary care for children with spina bifida in East and Southern Africa
verfasst von
Pierre Mertens
Femke Bannink
Publikationsdatum
01.12.2012
Verlag
Springer Milan
Erschienen in
Journal of Medicine and the Person / Ausgabe 3/2012
Print ISSN: 2035-9411
Elektronische ISSN: 2036-3877
DOI
https://doi.org/10.1007/s12682-012-0126-x

Weitere Artikel der Ausgabe 3/2012

Journal of Medicine and the Person 3/2012 Zur Ausgabe

Witnesses and leaders

Interview with Dr. Kathy Foley