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Urologic provider experiences in transitioning spina bifida patients from pediatric to adult care

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Abstract

Purpose

The lack of precedent in transitioning from pediatric to adult care poses a challenge to providers for patients with spina bifida (SB). The purpose of this study was to summarize perceptions about best practices for the care of adult spina bifida patients.

Materials and methods

A national survey was electronically distributed to 174 urologists who are current members of the Spina Bifida Association Network and AUA Working Group on Urologic Congenitalism. De-identified voluntary responses were assessed for implementation of and barriers to interdisciplinary adult SB clinics, continuity of care, and practices for transitioning from pediatric to adult care.

Results

The response rate was 40% with urologists practicing pediatrics, genitourinary reconstruction, female pelvic medicine and general urology. Patients undergoing transition or who have transitioned were seen in a multidisciplinary clinic (14%), regular adult clinic (34%), combined adult–pediatric multidisciplinary care (20%), or pediatric multidisciplinary clinic (28%). A majority believed transitioning to adult care should occur at 18 (24%) or 21 years (22%). In the absence of acute changes, providers followed adult SB patients annually with upper tract imaging (typically renal ultrasound) and serum creatinine. Acute urologic changes were preferentially managed with urodynamic testing and cystoscopy. Providers identified a need for multidisciplinary care in adult life, with neurosurgery/neurology (87%), social work (84%), and orthopedics (73%).

Conclusions

Potential solutions to improve the urologic care of this population suggest additional national provider resources, standardized guidelines, multidisciplinary collaboration, access to care, and an advanced-training pathway to improve care of adult patients with spina bifida.

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Author information

Authors and Affiliations

  1. School of Medicine, Case Western Reserve University, 2109 Adelbert Rd, Cleveland, OH, 44106, USA

    Shree Agrawal

  2. Urology, Cleveland Clinic Glickman Urological and Kidney Institute, 9500 Euclid Avenue, Q10-1, Cleveland, OH, 44195, USA

    Shree Agrawal, Kimberly Slocombe & Hadley M. Wood

  3. Department of Urology, University of Alabama Birmingham, FOT 1120, 1720 2nd Avenue South, Birmingham, AL, 35294, USA

    Tracey Wilson

  4. Department of Urology, Northwestern University, NMH/Galter Room 20-150, 675 N Saint Clair, Chicago, IL, 60611, USA

    Stephanie Kielb

Authors
  1. Shree Agrawal
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  2. Kimberly Slocombe
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  3. Tracey Wilson
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  4. Stephanie Kielb
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  5. Hadley M. Wood
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Contributions

SA, HW: project development, data collection/management, data analysis, manuscript writing/editing. KS: data analysis, manuscript writing/editing. TW: project development, manuscript writing/editing. SK: project development, manuscript writing/editing.

Corresponding author

Correspondence to Shree Agrawal.

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Conflict of interest

The authors have no conflicts of interest to report. There were no sources of funding for this study.

Human and animal rights

This type of study did not involve patients, as it was a survey. For this type of study, formal consent was not required, but survey participants agreed to participating in this institutional review board (IRB)-approved study software prior to initiating the survey.

Informed consent

Formal informed consent was not required for this type of study, but all participants were informed of the purpose of this IRB-approved study and understood no identifying details were collected in the process of this survey, and all responses were securely stored and remained confidential. Participants agreed to this statement prior to initiating the survey.

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Agrawal, S., Slocombe, K., Wilson, T. et al. Urologic provider experiences in transitioning spina bifida patients from pediatric to adult care. World J Urol 37, 607–611 (2019). https://doi.org/10.1007/s00345-019-02635-8

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  • DOI: https://doi.org/10.1007/s00345-019-02635-8

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