Skip to main content

Advertisement

SpringerLink
Log in

Transitional Urology Care for Patients with Spina Bifida

  • Urology (GE Tasian, Section Editor)
  • Published:
Current Pediatrics Reports Aims and scope Submit manuscript

Abstract

Purpose of Review

Patients with spina bifida require urologic care and follow-up throughout all phases of life. The transition from adolescence to adult care represents a high-risk time for these individuals and their families and can be challenging for providers. In this review, we seek to analyze the literature on spina bifida patients regarding issues pertinent to transition of their urologic care to adult clinics, providers, and hospitals, and to summarize the experience in the field to date.

Recent Findings

Experience in transitioning spina bifida patients to adult care is increasing. Efforts to better define the factors that determine successful transition and affect long-term care outcomes are ongoing.

Summary

A growing body of literature exists regarding spina bifida patients transitioning to adult care, but further experience and research will be required to define optimal ways to manage and provide care for these individuals in the future.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

Papers of particular interest, published recently, have been highlighted as: • Of importance

  1. Sawin KJ, Liu T, Ward E, et al. The National Spina Bifida Patient Registry: profile of a large cohort of participants from the first 10 clinics. J Pediatr. 2015;166:444.

    Article  PubMed  Google Scholar 

  2. Berry JG, Bloom S, Foley S, et al. Health inequity in children and youth with chronic health conditions. Pediatrics. 2010;126 Suppl 3:S111.

    Article  PubMed  Google Scholar 

  3. Shin M, Besser LM, Siffel C, et al. Prevalence of spina bifida among children and adolescents in 10 regions in the United States. Pediatrics. 2010;126:274.

    Article  PubMed  Google Scholar 

  4. Lloyd JC, Wiener JS, Gargollo PC, et al. Contemporary epidemiological trends in complex congenital genitourinary anomalies. J Urol. 2013;190:1590.

    Article  PubMed  Google Scholar 

  5. Atta CA, Fiest KM, Frolkis AD, et al. Global birth prevalence of spina bifida by folic acid fortification status: a systematic review and meta-analysis. Am J Public Health. 2016;106:e24.

    Article  PubMed  PubMed Central  Google Scholar 

  6. van der Toorn M, Cobussen-Boekhorst H, Kwak K, et al. Needs of children with a chronic bladder in preparation for transfer to adult care. J Pediatr Urol. 2013;9:509.

    Article  PubMed  Google Scholar 

  7. McGuire EJ, Woodside JR, Borden TA, et al. Prognostic value of urodynamic testing in myelodysplastic patients. J Urol. 1981;126:205.

    Article  PubMed  CAS  Google Scholar 

  8. • Musco S, Padilla-Fernandez B, Del Popolo G, et al. Value of urodynamic findings in predicting upper urinary tract damage in neuro-urological patients: a systematic review. Neurourol Urodyn. 2018 This quality systematic review investigates the available data regarding urodynamic parameters and upper urinary tract function primarily in the pediatric spina bifida population. It provides additional significant clinical evidence for the role of bladder compliance in upper tract deterioration in this population, emphasizing the ciritical role of urologists’ work to manage the lower urinary tract throughout childhood and adulthood.

  9. Ouyang L, Bolen J, Valdez R, et al. Characteristics and survival of patients with end stage renal disease and spina bifida in the United States renal data system. J Urol. 2015;193:558.

    Article  PubMed  Google Scholar 

  10. Fischer N, Church P, Lyons J, et al. A qualitative exploration of the experiences of children with spina bifida and their parents around incontinence and social participation. Child Care Health Dev. 2015;41:954.

    Article  PubMed  CAS  Google Scholar 

  11. • Liu T, Ouyang L, Thibadeau J, et al. Longitudinal study of bladder continence in patients with spina bifida in the National Spina Bifida Patient Registry. J Urol. 2017; This retrospective cohort study of spina bifida patients enrolled at 10 clinics across the nation provides a longitudinal view of the medical and surgical interventions being pursued in children and adolescents with spina bifida. Many of these patients are now in the age range to consider transition, and the study gives insight into the patient population we will soon be caring for in transitional clinics

  12. Chan R, Scovell J, Jeng Z, et al. The fate of transitional urology patients referred to a tertiary transitional care center. Urology. 2014;84:1544.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Szymanski KM, Misseri R, Whittam B, et al. Mortality after bladder augmentation in children with spina bifida. J Urol. 2015;193:643.

    Article  PubMed  Google Scholar 

  14. Lee NG, Andrews E, Rosoklija I, et al. The effect of spinal cord level on sexual function in the spina bifida population. J Pediatr Urol. 2015;11(142):e1.

    Google Scholar 

  15. Bong GW, Rovner ES. Sexual health in adult men with spina bifida. ScientificWorldJournal. 2007;7:1466.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Choi EK, Ji Y, Han SW. Sexual function and quality of life in young men with spina bifida: could it be neglected aspects in clinical practice? Urology. 2017;108:225.

    Article  PubMed  Google Scholar 

  17. Duplisea JJ, Romao RL, MacLellan DL, et al. Urological follow-up in adult spina bifida patients: is there an ideal interval? Urology. 2016;97:269.

    Article  PubMed  Google Scholar 

  18. Palmer JS, Kaplan WE, Firlit CF. Erectile dysfunction in spina bifida is treatable. Lancet. 1999;354:125.

    Article  PubMed  CAS  Google Scholar 

  19. Cass AS, Bloom BA, Luxenberg M. Sexual function in adults with myelomeningocele. J Urol. 1986;136:425.

    Article  PubMed  CAS  Google Scholar 

  20. Arata M, Grover S, Dunne K, et al. Pregnancy outcome and complications in women with spina bifida. J Reprod Med. 2000;45:743.

    PubMed  CAS  Google Scholar 

  21. Shepard, C. L., Yan, P. L., Hollingsworth, J. M. et al. Pregnancy among mothers with spina bifida. J Pediatr Urol, 2017.

  22. Auger N, Arbour L, Schnitzer ME, et al. Pregnancy outcomes of women with spina bifida. Disabil Rehabil. 2018:1.

  23. Szymanski KM, Hensel DJ, Wiener JS, et al. Sexual identity and orientation in adult men and women with spina bifida. J Pediatr Rehabil Med. 2017;10:313.

    Article  PubMed  Google Scholar 

  24. Rove KO, Higuchi TT. Monitoring and malignancy concerns in patients with congenital bladder anomalies. Curr Opin Urol. 2016;26:344.

    Article  PubMed  Google Scholar 

  25. Wiener JS, Suson KD, Castillo J, et al. Bowel management and continence in adults with spina bifida: results from the National Spina Bifida Patient Registry 2009-15. J Pediatr Rehabil Med. 2017;10:335.

    Article  PubMed  Google Scholar 

  26. • Szymanski KM, Cain MP, Whittam B, et al. All incontinence is not created equal: impact of urinary and fecal incontinence on quality of life in adults with spina bifida. J Urol. 2017;197:885. Szymanski and colleagues innovatively used electronic outreach and surveys to explore health-related quality of life issues in a larger cohort of adult spina bifida patients. In addition to being an early validated assessment focused on patient-reported quality of life, their study highlights the potential use of internet-based approaches to remain updated with, and more closely study, our young patient population.

    Article  PubMed  Google Scholar 

  27. Grimsby GM, Burgess R, Culver S, et al. Barriers to transition in young adults with neurogenic bladder. J Pediatr Urol. 2016;12(258):e1.

    Google Scholar 

  28. Summers SJ, Elliott S, McAdams S, et al. Urologic problems in spina bifida patients transitioning to adult care. Urology. 2014;84:440.

    Article  PubMed  Google Scholar 

  29. Szymanski KM, Cain MP, Hardacker TJ, et al. How successful is the transition to adult urology care in spina bifida? A single center 7-year experience. J Pediatr Urol. 2017;13(40):e1.

    Google Scholar 

  30. Shepard, C. L., Doerge, E. J., Eickmeyer, A. B. et al. Ambulatory care use among patients with spina bifida: change in care from childhood to adulthood. J Urol, 2017.

Download references

Author information

Authors and Affiliations

  1. Division of Urology, Department of Surgery, University of Pennsylvania Health System, 3400 Civic Center Boulevard Perelman, Center for Advanced Medicine – 3, West Philadelphia, PA, 19104, USA

    Robert C. Kovell, Alexander J. Skokan & Dana A. Weiss

  2. Division of Urology, Department of Surgery, Children’s Hospital of Philadelphia, 3400 Civic Center Boulevard Perelman, Center for Advanced Medicine – 3, West Philadelphia, PA, 19104, USA

    Robert C. Kovell & Dana A. Weiss

Authors
  1. Robert C. Kovell
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Alexander J. Skokan
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Dana A. Weiss
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Robert C. Kovell.

Ethics declarations

Conflict of Interest

Robert C. Kovell, Alexander J. Skokan, and Dana A. Weiss each declare no potential conflicts of interest.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

Additional information

This article is part of the Topical Collection on Urology

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Kovell, R.C., Skokan, A.J. & Weiss, D.A. Transitional Urology Care for Patients with Spina Bifida. Curr Pediatr Rep 6, 229–236 (2018). https://doi.org/10.1007/s40124-018-0179-2

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40124-018-0179-2

Keywords

Search

Navigation