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Transitional Urology

Transitional urology is the subspecialty bridging pediatric and adult urologic care for patients with congenital or acquired genitourinary conditions requiring lifelong management. It encompasses the structured process by which adolescents and young adults (AYAs) assume increasing responsibility for their own health care, transfer from pediatric to adult providers, and receive ongoing surveillance for condition-specific complications.[1][2] With improved survival, more individuals with complex congenital anomalies are reaching adulthood than ever before, creating an urgent need for dedicated adult expertise in conditions historically managed only by pediatric urologists.[3][4]

Definition and Scope​

Transition is distinct from transfer: transition is the longitudinal process of preparing the patient for adult-centered care, while transfer is the discrete event of moving to an adult provider.[5] The International Children's Continence Society (ICCS) position statement emphasizes that transition should begin in early adolescence and address medical, psychosocial, educational, and vocational needs.[5]

Core conditions requiring transitional urologic care:[2][6][7]

  • Neurogenic bladder (spina bifida, spinal cord injury, tethered cord)
  • Posterior urethral valves (PUV)
  • Bladder exstrophy-epispadias complex (BEEC)
  • Disorders / differences of sex development (DSD)
  • Hypospadias (particularly proximal / complex)
  • Anorectal malformations (cloacal anomalies)
  • Prune belly syndrome
  • Vesicoureteral reflux and CAKUT (congenital anomalies of the kidney and urinary tract)
  • History of cryptorchidism / orchiopexy, and the postpubertal undescended testis
  • Patients with augmentation cystoplasty, continent diversions, or catheterizable channels
  • Survivors of pediatric genitourinary malignancy (for example, pelvic rhabdomyosarcoma) with treatment-related lower urinary tract dysfunction

Universal Goals​

Regardless of the underlying condition, the overarching objectives are:[2][6][7]

  1. Preservation of renal function. This is the main lifelong goal.
  2. Optimization of lower urinary tract function. Safe storage and drainage.
  3. Urinary continence. It supports social participation, employment, and quality of life.
  4. Sexual function and fertility. Addressed proactively starting in adolescence.
  5. Surveillance for long-term surgical complications. Especially after augmentation cystoplasty or diversion.
  6. Condition-specific cancer evaluation. In adults with NLUTD after bowel-incorporating reconstruction, investigate gross hematuria or symptomatic recurrent UTI; assess the risk of retained DSD gonads by diagnosis; and counsel patients with prior cryptorchidism on testicular self-examination.[35][39][63]
  7. Psychosocial well-being and independence. Self-management, mental health, vocational planning.

The Transition Process​

When to Start​

The joint AAP, AAFP and ACP clinical report recommends beginning transition planning by age 12–14, with transfer of care ideally between ages 18 and 21, depending on developmental readiness and medical stability.[49][8] The Spina Bifida Association (SBA) 2023 guidelines begin life-course transition discussions at birth and formal transition preparation at ages 12–14.[9] The EAU 2026 paediatric guideline advises addressing transition from age 12 and by age 16 at the latest, with gradual introduction of the adult urologist several years before transfer.[48] It gives a weak recommendation to start transition at the onset of adolescence with paediatric and adult urologists working together, and a strong recommendation to develop a standardised transition program and to use a validated readiness tool.[48] Its supporting evidence is level 4.[48]

Transition Readiness Assessment​

Several tools have undergone validation studies, but measurement properties remain limited. A 2025 COSMIN review of 22 instruments graded all of them B because of insufficient or uncertain content validity and low-to-moderate quality of evidence, and none was clearly preferred:[8][10][11]

  • Transition Readiness Assessment Questionnaire (TRAQ). Most widely used; generic.
  • TRAQ-SB. Spina bifida-specific version, validated up to age 25.[9]
  • Good2Go Questionnaire. Evaluates self-advocacy, knowledge, self-care, and social support.[12]
  • TRxANSITION Scale, RTQ, and Got Transition tools.[10]

A retrospective Good2Go comparison (53 program participants versus 53 controls) found greater knowledge readiness (+12.78 points). Although some ER/admission comparisons improved, difference-in-differences analyses did not consistently establish reduced emergency utilization.[12]

Structured Transition Programs​

A systematic review of 20 studies found that structured transition programs with dedicated multidisciplinary clinics were associated with improved patient adherence and fewer emergency visits. Psychosocial readiness and family involvement were the primary predictors of successful transition. Barriers include inadequate patient education, lack of transition coordinators, limited adult care access, and financial constraints.[1]

A 9-year evaluation of a staged transition clinic for congenital neurogenic bladder reported transfer in 76/79 patients considered ready, among 157 program participants. Follow-up remained active in 55/76 transferred patients versus 63/171 patients entering adult care without formal transition.[13] The groups were selected and nonrandomized.[13]

Condition-Specific Considerations​

Spina Bifida / Neurogenic Bladder​

See the dedicated Neurogenic Bladder page for the full adult NLUTD workup, AUA/SUFU 2021 framework, and management ladder.

Spina bifida is the most common condition requiring transitional urology. Adult management issues:[2][14][15][16]

  • Ongoing CIC and anticholinergic management. Bladder dynamics can change with growth, puberty, and aging; urodynamic reassessment is often needed.[62] Reassessment triggers include a declining estimated GFR or new hydronephrosis on surveillance, a continence change (including new nocturnal enuresis or a shortened dry interval), or new or more frequent UTIs; bladder pain, frequency, urgency and incontinence can all reflect changing bladder function rather than true infection and should not be assumed to be recurrent UTI without confirmation.[62]
  • Renal surveillance. Proteinuria screening, renal function and upper-tract imaging, recognizing creatinine limitations with low muscle mass; use kidney-protective medication according to CKD phenotype and nephrology guidance rather than progressive CKD alone.
  • Augmentation cystoplasty complications. Metabolic acidosis, stone formation, UTIs, perforation risk, and malignancy surveillance (see below).
  • Bowel management. Fecal incontinence rated as the biggest issue by 50% of parents; continence is a major factor in social participation and employment.[9][15]
  • Sexual health. Dissatisfaction with sexual function is common; proactive counseling about fertility, contraception, and pregnancy planning is needed.[9]
  • Latex allergy. High prevalence; must be documented and communicated to adult providers.
  • Shunt management. Adult neurosurgery referral for VP shunt concerns.[9]

The SBA 2023 guidelines recommend a hand-off packet including medical summary, action plans for common complications (shunt malfunction, UTI, constipation, skin ulcers), and supply / equipment information.[9]

Disparities in access and outcomes. In registry analyses of children and young adults with spina bifida, male sex, non-Hispanic Black race, and lack of private insurance were each independently associated with lower odds of bladder and bowel continence; among participants aged 5–21, Hispanic/Latino patients had lower urinary (38.6% versus 44.9%) and bowel (43.9% versus 55.8%) continence at their most recent clinic visit than others.[51][52] Surgical management itself shows a more mixed pattern: across NSBPR centers, rates of bladder reconstruction surgery vary widely (12.1% to 37.9%) and are independently associated with treating center, spina bifida type, mobility, sex, and age, but not with race or insurance status after adjustment; rates of neurogenic-bowel surgery, by contrast, are independently associated with white race and private insurance in addition to clinical factors.[53][54] A patient's continence outcomes and access to bowel surgery may therefore already be shaped by demographic and insurance factors before reaching an adult reconstructive urologist, relevant to the system and provider barriers below.

Cost of lifelong care. In a U.S. employer-sponsored insurance claims study, adults with spina bifida had mean incremental medical expenditures in 2003 of $13,339 per year (ages 18–44) and $10,134 per year (ages 45–64) compared with insured adults without spina bifida in the same age groups; their total expenditures were three to six times as high, while a separate analysis of 14 infants born in 2002 found the highest per-capita expenditures among the study’s age groups in the first year of life.[55] A statewide cohort found a mean hospital cost of $39,059 per infant with spina bifida in the first year of life.[56] Caregivers of children with spina bifida worked an average of 7.5 to 11.3 fewer hours per week than Arkansas survey controls, depending on disability severity, translating to an estimated lifetime productivity cost of $133,755 (2002 dollars).[57] Successful transition to adult care is associated with a shift toward ambulatory rather than emergency care: in one health system, children used more ambulatory visits per year than fully transitioned adults (7.25 versus 5.33), while adults who did not complete transition used more inpatient and emergency care.[58]

Posterior Urethral Valves (PUV)​

See the dedicated Posterior Urethral Valves page for the full adult workup, valve-bladder management ladder, renal-preservation framework, transplantation, and surveillance protocol.

PUV is a major cause of congenital male outlet obstruction. Renal outcomes vary by cohort and follow-up: a Finnish series reported ESRD in 44/193 patients and a Kaplan–Meier lifetime estimate of 28.5%[18]. No new ESRD was observed after age 34 in that series.[17][18]

Adult issues:

  • Progressive CKD. In a selected cohort of 52 PUV patients (35 children and 17 adults), the pooled median eGFR decline was 2.6 mL/min/1.73 m²/year; decline occurred in both age groups, and proteinuria and recurrent febrile UTIs were associated with faster progression.[17]
  • "Valve bladder" syndrome. Lower urinary tract dysfunction was documented in 15/39 (38%) adults with complete follow-up after childhood PUV treatment; valve-bladder dysfunction can evolve over years and manifest as poor compliance, detrusor overactivity, or myogenic failure.[19][48]
  • Sexual function. In one selected adult PUV cohort, none of 32 men with sexual-function data reported erectile dysfunction and 4/32 reported slow ejaculation.[19]
  • Fertility. Across studies in a 2026 systematic review of childhood PUV survivors, reported paternity rates ranged from 6% to 58% and were lower among men with renal dysfunction or urinary incontinence.[70]
  • In a retrospective cohort of 196 children diagnosed with PUV before 24 months, CKD progression (12% versus 27%) and kidney replacement therapy (3% versus 20%) at five years were lower among 63 dedicated-clinic patients than 133 historical controls; nadir creatinine and early interventions differed between groups.[20]

Bladder Exstrophy-Epispadias Complex (BEEC)​

See the dedicated Bladder Exstrophy-Epispadias Complex page for the full adult continence-reconstruction ladder, continent diversion, malignancy surveillance, genital reconstruction, fertility, and pregnancy management.

Adults with BEEC face unique challenges related to continence, genital anatomy, sexual function, and fertility:[21][22][23][24][25]

  • Continence. In a selected 29-patient exstrophy-epispadias series, 83% achieved diurnal continence, while 76% required >1 continence procedure.[25]
  • Sexual function in males. In selected series, 55% of 38 men had normal erectile function, while 79% of men in a 29-patient exstrophy-epispadias cohort reported sexual satisfaction and 63% reported normal ejaculation; 73% of 39 men after urinary diversion reported a stable relationship. Short functional penile length and dorsal curvature are anatomical concerns.[21][22][24][25][48]
  • Sexual function in females. A Finnish comparison found similar FSFI domain scores and a higher median total score among responding women than controls.[21] A Dutch cohort of eight women found no difference from population comparators except for pain.[23] In another selected series, 25% of women underwent introitoplasty.[25] In a 2026 classic-bladder-exstrophy cohort, 20 of 27 eligible women responded; the authors reported that 42.6% met the FSFI dysfunction threshold and cautioned that standard scores may miss exstrophy-specific concerns.[64]
  • Male fertility. In a selected 39-man series after urinary diversion, oligoasthenoteratozoospermia was reported in 71%; in a separate adult series, mean ejaculate volume was 0.4 cc among four men who had semen analysis. Retrograde ejaculation has been described as a possible contributor to impaired fertility after exstrophy reconstruction.[22][26][66] In two selected adult series, 11/39 men after urinary diversion and 2/16 men with classic bladder exstrophy reported fathering children; fertility counseling may include ART.[22][24][26] Early sperm banking should be discussed.[22][24][26]
  • Female fertility. In an observational cohort of 52 women with classic bladder exstrophy, 19 reported 57 pregnancies; the authors concluded that fertility was impaired and pregnancy was high risk, and advised delivery at a tertiary obstetric unit with urology cover, usually by planned cesarean section.[27][69] The EAU 2026 guideline reports vaginal stenosis in 31%, pelvic organ prolapse and an increased risk of preterm labour in women with BEEC, and advises considering elective cesarean delivery.[48]
  • Psychosocial. 35% have not become sexually active (versus 11% of controls); high education levels but delayed social milestones.[21]

Hypospadias​

See the dedicated Hypospadias & Epispadias page for the full adult and reoperative decision framework.

Long-term follow-up reveals significant adult implications of childhood hypospadias repair:[28][29][30]

  • Reintervention rate. 39.2% of a 193-patient cohort had at least one reintervention; repair before 12 months carried the highest reintervention rate, even after excluding proximal cases, and proximal hypospadias was associated with suboptimal urinary and sexual outcomes.[28] EAU guidance gives 6–18 months as the usual primary-repair window.[48]
  • Suboptimal urinary or sexual outcomes in 53% of adolescents and young adults at long-term follow-up.[28]
  • Urethral stricture was found in 47% of adults presenting with complications after childhood repair, versus 11% of those never operated on, and the strictures were longer (5.5 versus 3.0 cm) in a retrospective series of 93 adults.[30]
  • Adult reoperation. In a retrospective 32-patient series, 90% of the 30 men undergoing urethroplasty had two-stage repair; initial success was 83%, with four recurrent strictures and one fistula at a median 9.5 years.[31] In a separate series of 48 two-stage buccal mucosa graft repairs, eight needed first-stage graft revision and nine developed a fistula requiring closure.[32]
  • LUTS (weak stream, dribbling, spraying) were reported about twice as often in adult men after hypospadias repair as in controls.[29] In a Danish registry of 1,083 men operated for hypospadias, 24.0% were registered as fathers of at least one live-born child versus 29.4% of age-matched men in the background population.[72]
  • Adult presenting problems. The EAU 2026 guideline, citing a systematic review, lists strictures (45–72%), LUTS (50–82%), urethrocutaneous fistula (16–30%), uncorrected hypospadias (14–43%), spraying (24%), UTI (15–25%), ventral curvature (14–24%) and lichen sclerosus (8–43%) among men with urological issues, and advises referral to a urethral reconstructive urologist.[48]

Undescended Testis / Cryptorchidism​

A history of childhood cryptorchidism carries an age-of-orchiopexy-dependent testicular cancer risk that should be part of transition counseling. In a large population-based cohort, the standardized incidence ratio for testicular cancer versus the general population was 2.23 (95% CI 1.58-3.06) after orchiopexy before age 13 and 5.40 (95% CI 3.20-8.53) after orchiopexy at or after age 13; no statistically significant difference was detected among surgery ages below 13.[59] This supports routine testicular self-examination counseling (not oncologic surveillance imaging) for any transitioning patient with a history of orchiopexy, with counseling emphasis proportional to age at surgery.

A separate scenario is the adult or postpubertal adolescent who presents with a still-undescended testis that was never surgically corrected. This patient is at increased testicular cancer risk and should be counseled about the risks and benefits of late orchiopexy; orchiectomy is a reasonable option when the contralateral testis is normal.

In a retrospective six-center cohort of children undergoing scrotal ultrasound, concurrent malignant germ cell tumor was found in 31/1,097 (2.8%) with microlithiasis and 45/36,766 (0.12%) without.[60] The AUA early-stage testicular cancer guideline advises no further evaluation for isolated microlithiasis without a solid mass or other risk factor.[63] With cryptorchidism or another germ-cell-tumor risk factor, counsel on periodic self-examination and clinical follow-up; the guideline does not mandate routine ultrasound surveillance.[63]

Disorders / Differences of Sex Development (DSD)​

See the dedicated Differences of Sex Development page for the adult urological domains: gonadal tumor surveillance and gonadectomy timing, feminizing-genitoplasty revision, testicular adrenal rest tumors, and androgen insensitivity.

Transition in DSD is particularly complex due to the intersection of medical, psychological, and identity-related needs:[33][34][35]

  • Hormone replacement. Gonadal deficiency calls for lifelong, individualized testosterone or estradiol replacement.[33] In adults with classic 21-hydroxylase-deficient CAH, continue daily glucocorticoids and reassess mineralocorticoid need during transition. For asymptomatic, nonpregnant nonclassic CAH, the Endocrine Society recommends against glucocorticoids .[68]
  • Gonadal tumor risk. Assess diagnosis, gonadal differentiation, location and patient preferences. Imaging and tumor markers cannot reliably exclude precursor lesions in retained gonads; specialist discussion of surveillance limitations and gonadectomy is needed.
  • Fertility preservation should be addressed in adolescence, with close collaboration between endocrinology, urology / gynecology, and reproductive medicine.[34][36]
  • Psychosocial support. A cornerstone of DSD management; loss to follow-up after pediatric care is a major problem, with patients frequently unable to find specialized adult providers.[35]
  • Multidisciplinary teams are recommended at all ages, including pediatric endocrinology, genetics, psychology, urology, and gynecology.[36][35]

Prune Belly Syndrome​

See the dedicated Prune Belly Syndrome page for the full adult workup: renal / transplant outcomes, dynamic bladder-function surveillance, fertility, malignancy, and abdominoplasty.

The Eagle-Barrett triad comprises abdominal-wall deficiency, urinary-tract dilation and bilateral cryptorchidism. Bladder emptying may change over time; in a historical series of 49 patients, 56% of the 34 with voiding data required CIC.[65] Assess residuals, renal status, infections and indicated UDS; PBS alone is not neurogenic LUTD. Small studies suggest possible functional benefit from abdominoplasty and document fertility impairment. Congenital renal vulnerability persists alongside potentially modifiable obstruction and infection.[2][7]

Anorectal Malformations (Cloacal Anomalies)​

See the dedicated Anorectal Malformations page for the associated urologic anomalies, the intertwined bowel–bladder reconstruction (ACE plus catheterizable channel), the bowel-management ladder, and the psychiatric burden.

In a 460-patient ARM series, 129 (28%) had a genitourinary anomaly, with prevalence increasing with malformation complexity[67]; recto-bladder-neck fistulae and cloacal malformations carry the highest renal and bladder morbidity, and associated spinal cord anomalies (52/117, 44.4% on MRI in a separate ARM series) may contribute to neurogenic bladder.[73] Adult issues center on renal preservation, neurogenic-bladder management (CIC, augmentation), the deeply intertwined bowel and bladder programs, sexual / fertility counseling, and a high and often underrecognized psychiatric burden. Transition is poorly systematized (most centers lack a protocol), so a structured multidisciplinary handoff with colorectal surgery, gynecology, and nephrology is needed.[2][7]

Survivors of Pediatric Genitourinary Malignancy​

Pediatric genitourinary cancer treatment can have reconstructive consequences in adult care. In an 11-child pelvic-rhabdomyosarcoma cohort treated under a bladder-sparing surgical policy, all seven who received pelvic radiotherapy had abnormal voiding; the six with measurable functional bladder capacity had values of 11–48% of the age-expected mean at a mean 6.6 years after therapy, while four without radiotherapy had normal capacity and voiding.[71] In a single-institution cohort of 26 female five-year survivors, the 23 survivors at analysis had median follow-up of 20.3 years; 23/26 (88%) had at least one grade 3/4 late effect (median 3 grade 3/4 effects per patient), and patients who received radiotherapy had a substantially greater burden of late effects than those who did not (median 9.5 versus 1 late effect per patient).[61] A childhood pelvic-rhabdomyosarcoma survivor presenting in adulthood with an acquired small-capacity, poorly compliant bladder is a plausible candidate for the same augmentation-cystoplasty and bladder-reconstruction ladder used for other congenital and acquired causes of a hostile bladder; sexual dysfunction is also a recognized long-term complication in this population.

Augmentation Cystoplasty: Lifelong Surveillance​

Patients with augmentation cystoplasty (most commonly for neurogenic bladder or exstrophy) require lifelong follow-up for multiple complications:[37][38][39]

  • Metabolic complications. Hyperchloremic metabolic acidosis, vitamin B12 deficiency (ileal segments), electrolyte disturbances; annual basic metabolic panel recommended.[39]
  • Urinary tract infections. Bacteriuria is common; distinguish symptomatic infection from asymptomatic bacteriuria to avoid unnecessary antibiotics.
  • Stone formation. Related to mucus production, stasis, and metabolic changes.
  • Perforation. Life-threatening; patients must know warning signs (abdominal pain, fever, peritonitis).
  • Malignancy risk. The most debated long-term concern:
    • Reported follow-up probabilities of malignancy after augmentation ranged from 0–5.5% across studies; mean latency was 19 years in the systematic review, while a nationwide 16-patient tumor series reported median latency of 20 years.[37][38]
    • Adenocarcinoma is the most common histologic type (52%), and about half of tumors arise at the entero-urinary anastomosis.[37][40]
    • Tumors are often diagnosed at an advanced stage with a poor prognosis (1-year survival 56% in a nationwide series of 16 patients).[38]
    • Whether augmentation itself is an independent risk factor (versus the underlying congenital bladder abnormality) remains debated; one matched cohort found no significant difference in cancer incidence between augmented and non-augmented patients (4.6% versus 2.6%, P = 0.54).[41]
    • Renal transplant immunosuppression was associated with bladder malignancy across the augmented and nonaugmented patients with congenital bladder dysfunction (3/20 versus 8/286 without immunosuppression) in an observational cohort.[41]
    • The AUA / SUFU guideline recommends annual assessment with focused history, physical exam, basic metabolic panel, and urinary-tract imaging for adult NLUTD patients with bowel-incorporating reconstructions. Applying that framework to non-neurogenic congenital conditions requires individualized judgment.[39]
    • AUA/SUFU recommends against screening or surveillance cystoscopy in NLUTD patients, including chronic indwelling-catheter users .[50] New hematuria, recurrent symptomatic UTI, or other concerning changes warrant investigation. In adults with NLUTD and bowel-incorporating reconstruction, AUA/SUFU Statement 60 recommends cystoscopy for gross hematuria or symptomatic recurrent UTI .[39] In the Higuchi cohort, annual endoscopy/cytology was stopped after five surveillance years, beginning a median 15 years after augmentation[42]. An older three-cancer series advocated starting at postoperative year 10.[43]
    • Urine FISH remains unvalidated for routine augmented-bladder screening. A 36-patient study obtained FISH in 24 and biopsy in 32, with only two cancers.[44] Both were FISH-positive, producing the reported 100% sensitivity.[44]
    • Molecular profiling reveals mutations similar to gastrointestinal adenocarcinomas (TP53, KRAS, MYC), with potentially targetable alterations (ATM, BRCA1, EGFR, ERBB2) in a small selected tumor series. These are exploratory treatment leads for established cancer.[45]

Models of Care​

The AUA Working Group on Genitourinary Congenitalism (2015) emphasized that management of complex congenital urologic disease in adults is difficult due to the lack of long-term data, and suggested that consensus discussion among providers across the life course may help guide care.[27] Models include:

  • Dedicated transitional urology clinics. Joint pediatric-adult clinics where patients are seen by both teams simultaneously during the transition period; associated with improved adherence in observational studies.[1][13]
  • Specialist adult congenital urology centers. Concentrated expertise for rare conditions; European consensus supports lifelong specialist care; comparative superiority has not been established.[3]
  • Multidisciplinary teams. Urology, nephrology, neurosurgery, physiatry, psychology, social work, and transition coordinators.[1][9]
  • Digital health solutions. Emerging tools for remote monitoring, patient education, and telehealth follow-up to address geographic disparities.[1]

In one 24-patient referral series, management changed in 17/24, including procedures in 14/24 (seven augmentation/diversion, five Botox and two stone operations).[46]

Barriers to Successful Transition​

CategoryExamples
Patient / familyLow health literacy, desire for normalcy, reluctance to leave familiar pediatric team, cognitive impairment
ProviderLimited adult-urologist training in congenital conditions, unfamiliarity with reconstructed anatomy
SystemLack of transition coordinators, insurance gaps (aging out of pediatric coverage), geographic disparities, no standardized protocols
PsychosocialMental-health comorbidities, social isolation, delayed autonomy, inadequate vocational support

Key Recommendations Summary​

  • Begin transition planning at age 12–14 using validated readiness-assessment tools; conduct part of each visit without parents present.[8][9] The EAU 2026 guideline gives the window as from age 12 and by 16 at the latest.[48]
  • Establish a multidisciplinary transition team including a dedicated transition coordinator.[1][9]
  • Prepare a comprehensive hand-off packet with medical and surgical history, prior operative reports, current renal function and continence status, surveillance imaging and laboratory results, current management plans, action plans for common complications, and supply and equipment needs.[9][48]
  • Transfer during medical and social stability. Avoid transfer during acute illness, major surgery or psychosocial crisis. For young people with CKD, KDIGO 2024 also advises more frequent assessment than for older adults at the same CKD stage and, with the patient's agreement, caregiver involvement during the first 1–3 years after transfer (Practice Points 5.3.1.1.3 and 5.3.1.2.3).[10]
  • Ensure lifelong surveillance. Renal function, bladder dynamics, metabolic parameters, and malignancy screening as indicated by the specific condition and surgical history.[2][3][39]
  • Address sexual health and fertility proactively. These are consistently identified as unmet needs across all congenital urologic conditions.[2][47][24]
  • Recognize that adult management frequently differs from childhood. Bladder dynamics change with growth and aging, new complications emerge, and surgical needs evolve.[4][46]

See Also​

References​

1. Akdağcık Z, Soytürk S, Sılay MS, et al. "Transitional Urology in Congenital and Neurological Conditions: A Global Review of Structured Care Models and Clinical Outcomes." World J Urol. 2025;43(1):628. doi:10.1007/s00345-025-06021-5

2. Peycelon M, Misseri R. "The Basics of Transition in Congenital Lifelong Urology." World J Urol. 2021;39(4):993-1001. doi:10.1007/s00345-020-03116-z

3. Wood D, Baird A, Carmignani L, et al. "Lifelong Congenital Urology: The Challenges for Patients and Surgeons." Eur Urol. 2019;75(6):1001-1007. doi:10.1016/j.eururo.2019.03.019

4. Woodhouse CR, Neild GH, Yu RN, Bauer S. "Adult Care of Children From Pediatric Urology." J Urol. 2012;187(4):1164-1171. doi:10.1016/j.juro.2011.12.011

5. Bower WF, Christie D, DeGennaro M, et al. "The Transition of Young Adults With Lifelong Urological Needs From Pediatric to Adult Services: An International Children's Continence Society Position Statement." Neurourol Urodyn. 2017;36(3):811-819. doi:10.1002/nau.23039

6. Lambert SM. "Transitional Care in Pediatric Urology." Semin Pediatr Surg. 2015;24(2):73-78. doi:10.1053/j.sempedsurg.2015.01.004

7. Wiener JS, Huck N, Blais AS, et al. "Challenges in Pediatric Urologic Practice: A Lifelong View." World J Urol. 2021;39(4):981-991. doi:10.1007/s00345-020-03203-1

8. Meyers MJ, Irwin CE. "Health Care Transitions for Adolescents." Pediatrics. 2023;151(Suppl 1):e2022057267L. doi:10.1542/peds.2022-057267L

9. Fremion E, Kaufman M, Mukherjee S, Murphy P, Smith K. "2023 Updates to the Spina Bifida Transition to Adult Care Guidelines." J Pediatr Rehabil Med. 2023;16(4):583-593. doi:10.3233/PRM-230052

10. Kidney Disease: Improving Global Outcomes (KDIGO) Guideline Workgroup. "KDIGO 2024 Clinical Practice Guideline for the Evaluation and Management of Chronic Kidney Disease." Kidney Int. 2024;105(4S):S117-S314. doi:10.1016/j.kint.2023.10.018

11. Yi T, Hu Y, Xia L, et al. "Instruments to Assess Transition Readiness Among Adolescents With Chronic Disease: A COSMIN Systematic Review of Measurement Properties." Child Care Health Dev. 2025;51(1):e70017. doi:10.1111/cch.70017

12. Chua ME, Lee SY, Tanaka S, Hearld KR, Lemak CH. "The Impact of Urologic Transitional Care Program on Change in Transition Readiness and Healthcare Resource Utilization Among Adolescent Patients With Congenital Urogenital Conditions Needing Lifelong Care." Pediatr Surg Int. 2026;42(1):62. doi:10.1007/s00383-025-06281-7

13. Blubaum A, Lewis J, Frimberger D, Slobodov G. "9-Year Evaluation of a Transitional Care Program for Congenital Neurogenic Bladder Patients." Urology. 2023;180:285-290. doi:10.1016/j.urology.2023.06.023

14. Snow-Lisy DC, Yerkes EB, Cheng EY. "Update on Urological Management of Spina Bifida From Prenatal Diagnosis to Adulthood." J Urol. 2015;194(2):288-296. doi:10.1016/j.juro.2015.03.107

15. Iskandar BJ, Finnell RH. "Spina Bifida." N Engl J Med. 2022;387(5):444-450. doi:10.1056/NEJMra2116032

16. Brownrigg N, Lorenzo AJ, Rickard M, Dos Santos J. "The Urological Evaluation and Management of Neurogenic Bladder in Children and Adolescents." Pediatr Nephrol. 2024;39(2):409-421. doi:10.1007/s00467-023-06064-z

17. Huang VW, Behairy M, Abelson B, et al. "Kidney Disease Progression in Pediatric and Adult Posterior Urethral Valves (PUV) Patients." Pediatr Nephrol. 2024;39(3):829-835. doi:10.1007/s00467-023-06128-0

18. Heikkilä J, Holmberg C, Kyllönen L, Rintala R, Taskinen S. "Long-Term Risk of End Stage Renal Disease in Patients With Posterior Urethral Valves." J Urol. 2011;186(6):2392-2396. doi:10.1016/j.juro.2011.07.109

19. Çetin B, Dönmez Mİ, Erdem S, Ziylan O, Oktar T. "Renal, Bladder and Sexual Outcomes in Adult Men With History of Posterior Urethral Valves Treated in Childhood." Urology. 2021;153:301-306. doi:10.1016/j.urology.2020.11.002

20. Rickard M, Lorenzo AJ, Robinson C, et al. "Impact of a Standardized Care Pathway and a Dedicated Multidisciplinary Posterior Urethral Valve Clinic on 5-Year Kidney and Bladder Outcomes." Pediatr Nephrol. 2025. doi:10.1007/s00467-025-06864-5

21. Suominen JS, Santtila P, Taskinen S. "Sexual Function in Patients Operated on for Bladder Exstrophy and Epispadias." J Urol. 2015;194(1):195-199. doi:10.1016/j.juro.2015.01.098

22. Rubenwolf P, Thomas C, Thüroff JW, Stein R. "Sexual Function, Social Integration and Paternity of Males With Classic Bladder Exstrophy Following Urinary Diversion." J Urol. 2016;195(2):465-470. doi:10.1016/j.juro.2015.08.076

23. Zhu X, Klijn AJ, de Kort LMO. "Urological, Sexual, and Quality of Life Evaluation of Adult Patients With Exstrophy-Epispadias Complex: Long-Term Results From a Dutch Cohort." Urology. 2020;136:272-277. doi:10.1016/j.urology.2019.10.011

24. Reynaud N, Courtois F, Mouriquand P, et al. "Male Sexuality, Fertility, and Urinary Continence in Bladder Exstrophy-Epispadias Complex." J Sex Med. 2018;15(3):314-323. doi:10.1016/j.jsxm.2018.01.004

25. Sinatti C, Waterschoot M, Roth J, et al. "Long-Term Sexual Outcomes in Patients With Exstrophy-Epispadias Complex." Int J Impot Res. 2021;33(2):164-169. doi:10.1038/s41443-020-0248-2

26. Ben-Chaim J, Jeffs RD, Reiner WG, Gearhart JP. "The Outcome of Patients With Classic Bladder Exstrophy in Adult Life." J Urol. 1996;155(4):1251-1252. doi:10.1016/s0022-5347(01)66233-5

27. Eswara JR, Kielb S, Koyle MA, Wood D, Wood HM. "The Recommendations of the 2015 American Urological Association Working Group on Genitourinary Congenitalism." Urology. 2016;88:1-7. doi:10.1016/j.urology.2015.11.019

28. Tack LJW, Springer A, Riedl S, et al. "Adolescent and Young Adult Urogenital Outcome Following Childhood Hypospadias Repair: Perfection Revisited." J Urol. 2021;206(3):734-744. doi:10.1097/JU.0000000000001869

29. Diamond DA, Chan IHY, Holland AJA, et al. "Advances in Paediatric Urology." Lancet. 2017;390(10099):1061-1071. doi:10.1016/S0140-6736(17)32282-1

30. Hoy NY, Rourke KF. "Better Defining the Spectrum of Adult Hypospadias: Examining the Effect of Childhood Surgery on Adult Presentation." Urology. 2017;99:281-286. doi:10.1016/j.urology.2016.07.057

31. Morrison CD, Cinà DP, Gonzalez CM, Hofer MD. "Surgical Approaches and Long-Term Outcomes in Adults With Complex Reoperative Hypospadias Repair." J Urol. 2018;199(5):1296-1301. doi:10.1016/j.juro.2017.11.078

32. Aldamanhori RB, Osman NI, Inman RD, Chapple CR. "Contemporary Outcomes of Hypospadias Retrieval Surgery in Adults." BJU Int. 2018;122(4):673-679. doi:10.1111/bju.14355

33. Nordenström A, Mangone A, Mantovani G. "Hormone Replacement in Disorders of Sex Development, and Long-Term Effects." Best Pract Res Clin Endocrinol Metab. 2025:102022. doi:10.1016/j.beem.2025.102022

34. Nowotny HF, Reisch N. "Challenges Waiting for an Adult With DSD." Horm Res Paediatr. 2023;96(2):207-221. doi:10.1159/000527433

35. Cools M, Nordenström A, Robeva R, et al. "Caring for Individuals With a Difference of Sex Development (DSD): A Consensus Statement." Nat Rev Endocrinol. 2018;14(7):415-429. doi:10.1038/s41574-018-0010-8

36. Claahsen-van der Grinten HL, van Herwaarden A, Kempers M, et al. "Approach to the Patient: Comprehensive Multidisciplinary Care for Adolescents With Difference in Sex Development (DSD)." J Clin Endocrinol Metab. 2026;111(4):e1183-e1194. doi:10.1210/clinem/dgag023

37. Biardeau X, Chartier-Kastler E, Rouprêt M, Phé V. "Risk of Malignancy After Augmentation Cystoplasty: A Systematic Review." Neurourol Urodyn. 2016;35(6):675-682. doi:10.1002/nau.22775

38. Garnier S, Vendrell J, Boillot B, et al. "Malignancy After Augmentation Enterocystoplasty: A Nationwide Study of Natural History, Prognosis and Oncogene Panel Analysis." J Urol. 2020;204(1):136-143. doi:10.1097/JU.0000000000000752

39. Ginsberg DA, Boone TB, Cameron AP, et al. "The AUA / SUFU Guideline on Adult Neurogenic Lower Urinary Tract Dysfunction: Treatment and Follow-Up." J Urol. 2021;206(5):1106-1113. doi:10.1097/JU.0000000000002239

40. Anderson JA, Matoso A, Murati Amador BI, et al. "Invasive Poorly Differentiated Adenocarcinoma of the Bladder Following Augmentation Cystoplasty: A Multi-Institutional Clinicopathological Study." Pathology. 2021;53(2):214-219. doi:10.1016/j.pathol.2020.07.005

41. Higuchi TT, Granberg CF, Fox JA, Husmann DA. "Augmentation Cystoplasty and Risk of Neoplasia: Fact, Fiction and Controversy." J Urol. 2010;184(6):2492-2496. doi:10.1016/j.juro.2010.08.038

42. Higuchi TT, Fox JA, Husmann DA. "Annual Endoscopy and Urine Cytology for the Surveillance of Bladder Tumors After Enterocystoplasty for Congenital Bladder Anomalies." J Urol. 2011;186(5):1791-1795. doi:10.1016/j.juro.2011.07.028

43. Soergel TM, Cain MP, Misseri R, et al. "Transitional Cell Carcinoma of the Bladder Following Augmentation Cystoplasty for the Neuropathic Bladder." J Urol. 2004;172(4 Pt 2):1649-1652. doi:10.1097/01.ju.0000140194.87974.56

44. Ceyhan E, Mammadov E, Onder SC, Dogan HS, Tekgul S. "FISH: A Promising Screening Tool for Malignancy After Augmentation Cystoplasty?" J Pediatr Surg. 2024;59(4):725-730. doi:10.1016/j.jpedsurg.2023.11.006

45. Stohr BA, Chan E, Anderson JA, et al. "Molecular Characterization of Adenocarcinomas Arising in the Urinary Bladder Following Augmentation Cystoplasty: A Multi-Institutional Study." Hum Pathol. 2022;129:98-102. doi:10.1016/j.humpath.2022.09.003

46. Chan R, Scovell J, Jeng Z, et al. "The Fate of Transitional Urology Patients Referred to a Tertiary Transitional Care Center." Urology. 2014;84(6):1544-1548. doi:10.1016/j.urology.2014.08.022

47. Higuchi T, Holmdahl G, Kaefer M, et al. "International Consultation on Urological Diseases: Congenital Anomalies of the Genitalia in Adolescence." Urology. 2016;94:288-310. doi:10.1016/j.urology.2016.03.019

48. European Association of Urology. EAU Guidelines on Paediatric Urology: Hypospadias (section 9) and Transitional Urology (section 27). 2026 limited update, March 2026. Hypospadias chapter; transitional urology chapter.

49. White PH, Cooley WC; Transitions Clinical Report Authoring Group; American Academy of Pediatrics; American Academy of Family Physicians; American College of Physicians. "Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home." Pediatrics. 2018;142(5):e20182587. doi:10.1542/peds.2018-2587

50. Ginsberg DA, Boone TB, Cameron AP, et al. "The AUA/SUFU Guideline on Adult Neurogenic Lower Urinary Tract Dysfunction: Diagnosis and Evaluation." J Urol. 2021;206(5):1097-1105. doi:10.1097/JU.0000000000002235

51. Schechter MS, Liu T, Soe M, Swanson M, Ward E, Thibadeau J. "Sociodemographic Attributes and Spina Bifida Outcomes." Pediatrics. 2015;135(4):e957-64. doi:10.1542/peds.2014-2576

52. Smith KA, Liu T, Freeman KA, et al. "Differences in Continence Rates in Individuals With Spina Bifida Based on Ethnicity." J Pediatr Rehabil Med. 2019;12(4):361-368. doi:10.3233/PRM-180556

53. Routh JC, Joseph DB, Liu T, et al. "Bladder Reconstruction Rates Differ Among Centers Participating in National Spina Bifida Patient Registry." J Urol. 2018;199(1):268-273. doi:10.1016/j.juro.2017.08.084

54. Routh JC, Joseph DB, Liu T, et al. "Variation in Surgical Management of Neurogenic Bowel Among Centers Participating in National Spina Bifida Patient Registry." J Pediatr Rehabil Med. 2017;10(3-4):303-312. doi:10.3233/PRM-170460

55. Ouyang L, Grosse SD, Armour BS, Waitzman NJ. "Health Care Expenditures of Children and Adults With Spina Bifida in a Privately Insured U.S. Population." Birth Defects Res A Clin Mol Teratol. 2007;79(7):552-8. doi:10.1002/bdra.20360

56. Radcliff E, Cassell CH, Tanner JP, et al. "Hospital Use, Associated Costs, and Payer Status for Infants Born With Spina Bifida." Birth Defects Res A Clin Mol Teratol. 2012;94(12):1044-53. doi:10.1002/bdra.23084

57. Tilford JM, Grosse SD, Goodman AC, Li K. "Labor Market Productivity Costs for Caregivers of Children With Spina Bifida: A Population-Based Analysis." Med Decis Making. 2009;29(1):23-32. doi:10.1177/0272989X08322014

58. Shepard CL, Doerge EJ, Eickmeyer AB, Kraft KH, Wan J, Stoffel JT. "Ambulatory Care Use Among Patients With Spina Bifida: Change in Care From Childhood to Adulthood." J Urol. 2018;199(4):1050-1055. doi:10.1016/j.juro.2017.10.040

59. Pettersson A, Richiardi L, Nordenskjold A, Kaijser M, Akre O. "Age at Surgery for Undescended Testis and Risk of Testicular Cancer." N Engl J Med. 2007;356(18):1835-41. doi:10.1056/NEJMoa067588

60. Trout AT, Chow J, McNamara ER, et al. "Association Between Testicular Microlithiasis and Testicular Neoplasia: Large Multicenter Study in a Pediatric Population." Radiology. 2017;285(2):576-583. doi:10.1148/radiol.2017162625

61. Spunt SL, Sweeney TA, Hudson MM, Billups CA, Krasin MJ, Hester AL. "Late Effects of Pelvic Rhabdomyosarcoma and Its Treatment in Female Survivors." J Clin Oncol. 2005;23(28):7143-51. doi:10.1200/JCO.2005.12.096

62. Wood H, Wood D. Adolescent and Transitional Urology. In: Partin AW, Dmochowski RR, Kavoussi LR, Peters CA, eds. Campbell-Walsh-Wein Urology. 13th ed. Elsevier; 2025:1348-1364.

63. American Urological Association. Diagnosis and Treatment of Early-Stage Testicular Cancer: AUA Guideline. 2019, amended 2023. Official guideline

64. Abdellaoui S, Cazzorla F, Neuville P, et al. "Long-term sexual outcomes in classic bladder exstrophy: Insights from standardized scores." J Pediatr Urol. 2026;22(3):105713. doi:10.1016/j.jpurol.2025.105713

65. Kinahan TJ, Churchill BM, McLorie GA, Gilmour RF, Khoury AE. "The efficiency of bladder emptying in the prune belly syndrome." J Urol. 1992;148(2 Pt 2):600-603. doi:10.1016/s0022-5347(17)36665-x

66. Ansari MS, Cervellione RM, Gearhart JP. "Sexual Function and Fertility Issues in Cases of Exstrophy Epispadias Complex." Indian J Urol. 2010;26(4):595-597. doi:10.4103/0970-1591.74477

67. Oh C, Youn JK, Han JW, Yang HB, Kim HY, Jung SE. "Analysis of Associated Anomalies in Anorectal Malformation: Major and Minor Anomalies." J Korean Med Sci. 2020;35(14):e98. doi:10.3346/jkms.2020.35.e98

68. Speiser PW, Arlt W, Auchus RJ, et al. "Congenital Adrenal Hyperplasia Due to Steroid 21-Hydroxylase Deficiency: An Endocrine Society Clinical Practice Guideline." J Clin Endocrinol Metab. 2018;103(11):4043-4088. doi:10.1210/jc.2018-01865

69. Deans R, Banks F, Liao LM, Wood D, Woodhouse C, Creighton SM. "Reproductive outcomes in women with classic bladder exstrophy: an observational cross-sectional study." Am J Obstet Gynecol. 2012;206(6):496.e1-6. doi:10.1016/j.ajog.2012.03.016

70. Gnech M, Pakkasjärvi N, 't Hoen L, et al. "Long-term sexual function, fertility, and quality of life after childhood treatment for posterior urethral valves: a systematic review of clinical outcomes." J Sex Med. 2026;23(3):qdag035. doi:10.1093/jsxmed/qdag035

71. Yeung CK, Ward HC, Ransley PG, Duffy PG, Pritchard J. "Bladder and kidney function after cure of pelvic rhabdomyosarcoma in childhood." Br J Cancer. 1994;70(5):1000-1003. doi:10.1038/bjc.1994.437

72. Asklund C, Jensen TK, Main KM, Sobotka T, Skakkebaek NE, Jørgensen N. "Semen quality, reproductive hormones and fertility of men operated for hypospadias." Int J Androl. 2010;33(1):80-87. doi:10.1111/j.1365-2605.2009.00957.x

73. Duci M, Midrio P, Castagnetti M, et al. "Urinary Tract Anomalies in Patients With Anorectal Malformations: The Role of Screening and Clinical Follow-Up." Urology. 2020;143:216-220. doi:10.1016/j.urology.2020.05.052