Urologic Problems in Spina Bifida Patients Transitioning to Adult Care

Summers, Stephen J.; Elliott, Sean P.; McAdams, Sean; Oottamasathien, Siam; Brant, William O.; Presson, Angela P.; Fleck, Joseph; West, Jeffrey A.; Myers, Jeremy B.

doi:10.1016/j.urology.2014.03.041

Cited by 52 publications

(33 citation statements)

References 9 publications

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“…5 Clean intermittent catheterization (CIC), the use of bladder-active medications (BAMs), and close urological follow-up can mitigate many of the potentially life-threatening complications of neurogenic bladder dysfunction, but patients' quality of life (QOL) is considerably affected by the lifelong burden of these interventions, the lack of control of their ability to empty their bladders, and by incontinence and sexual dysfunction. 4,5,9,10,13,15,21,25,[28][29][30] For more than 100 years, researchers and clinicians have pursued a myriad of surgical remedies to allow reinnervation of the urinary bladder, attempting a variety of nerve repair and transfer techniques in experimental animals and in humans. 11 While there has been great success in the clinical use of nerve transfer techniques to reinnervate peripheral nerves of the extremities, 3 there is no surgical nerve transfer or repair procedure that is widely used in patients with neurogenic bladder dysfunction.…”

mentioning

confidence: 99%

Lack of efficacy of an intradural somatic-to-autonomic nerve anastomosis (Xiao procedure) for bladder control in children with myelomeningocele and lipomyelomeningocele: results of a prospective, randomized, double-blind study

Tuite

Polsky²,

Homsy³

et al. 2016

PED

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OBJECTIVE Xiao et al. and other investigators have studied an intradural somatic-to-autonomic (e.g., L-5 to S3–4) nerve transfer as a method to create a reflex arc to allow bladder emptying in response to cutaneous stimulation (the Xiao procedure). In previous clinical studies of patients with spinal dysraphism who underwent the Xiao procedure, high success rates (70%–85%) were reported for the establishment of a “skin-CNS-bladder” reflex arc that allows spontaneous, controlled voiding in children with neurogenic bladder dysfunction. However, many of these studies did not use blinded observers, did not have control groups, and/or featured only limited follow-up durations. METHODS A randomized, prospective, double-blind trial was initiated in March 2009, enrolling children with myelomeningocele (MM), lipomyelomeningocele (LMM), and neurogenic bladder dysfunction who were scheduled for spinal cord detethering (DT) for the usual indications. At the time of DT, patients were randomized between 2 arms of the study: half of the patients underwent a standard spinal cord DT procedure alone (DT group) and half underwent DT as well as the Xiao procedure (DT+X group). Patients, families, and study investigators, all of whom were blinded to the surgical details, analyzed the patients' strength, sensory function, mobility, voiding, and urodynamic bladder function before surgery and at regular intervals during the 3-year follow-up. RESULTS Twenty patients were enrolled in the study: 10 underwent only DT and the other 10 underwent DT+X. The addition of the Xiao procedure to spinal cord DT resulted in longer operative times (p = 0.024) and a greater chance of wound infection (p = 0.03). Patients in both treatment arms could intermittently void or dribble small amounts of urine (< 20% total bladder capacity) in response to scratching in dermatomes T-9 through S-2 using a standardized protocol, but the voiding was not reproducible and the volume voided was not clinically useful in any patient. Voiding in response to scratching was not more frequent in patients who underwent DT+X compared with those who underwent only DT. Bladder contractions in response to scratching occurred in both treatment arms at various intervals after surgery, but they were not more reproducible or more frequent in the patients who underwent the Xiao procedure than in the patients who did not. No patient in either treatment arm was continent of urine before, during, or after the study. CONCLUSIONS Patients with MM and LMM who underwent the Xiao procedure during spinal cord DT were no more likely to be able to void, to control their urination, to achieve continence, or to have a demonstrable urodynamic bladder contraction in response to cutaneous stimulation than patients who underwent only spinal cord DT. This study, in the context of disappointing results reported in other recent studies of the Xiao procedure, raises doubts about the clinical applicability of this procedure in humans until further basic science research is performed.

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mentioning

confidence: 99%

Lack of efficacy of an intradural somatic-to-autonomic nerve anastomosis (Xiao procedure) for bladder control in children with myelomeningocele and lipomyelomeningocele: results of a prospective, randomized, double-blind study

Tuite

Polsky²,

Homsy³

et al. 2016

PED

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“…1,5,8,9 Interestingly, 39% of urologists suggested that the transition process should begin at the age of 18 or older. In most Canadian centres, this is when the transfer of care is expected to have already taken place from pediatric care.…”

Section: Discussionmentioning

confidence: 99%

The transition process of spina bifida patients to adult-centred care: An assessment of the Canadian urology landscape

Wajchendler¹,

Anderson²,

Koyle³

2017

CUAJ

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Introduction: Due to medical advances over the past three decades, the vast majority of children with spina bifida (SB) now survive into adulthood. As a result, there is a need to implement a well-defined urological transition process for these patients from the pediatric to adult environment. The objective of this study was to identify and analyze the current medical practices employed and the attitudes regarding transition by Canadian pediatric urologists caring for the SB population. Methods: A survey consisting of 14 questions pertaining to physician demographics, current practice, and attitudes towards the transition process of SB patients was distributed at the 2015 annual Pediatric Urologists of Canada (PUC) conference. The survey respondents remained anonymous, and the data were collected and analyzed. Results: A total of 28 surveys were collected from urologists across Canada (25 full-time pediatric, three also providing adult care), representing a >75% response rate. The transition process was suggested to begin at the age of 18 or older by 43% (12/28) of pediatric urologists. The majority, 86% (24/28), do not currently use a questionnaire or a checklist to determine transition readiness of patients. Forty-six percent (13/28) of pediatric urologists do not provide ongoing urological care to their patients after referral has been made to adult-centred care. In the province of Ontario, in which 39% (11/28) of the pediatric urologists practice, 82% (9/11) are full-time pediatric urologists and 78% (7/9) do not provide ongoing care to SB patients after the age of 18. Conclusions: A significant minority of Canadian pediatric urologists perceive that the transition process should begin at the age of 18 or older. As such, it can be inferred that transfer of care and transition are synonymous, not independent. Simplistically, this suggests that transition represents an event rather than a longitudinal process. The fact there is no defined ongoing urological care as a component of this process, suggests the potential for substandard quality of care after these patients graduate to the adult sector. Different provincial healthcare systems and funding plans may further hinder this transition of care by denying provider continuity based on reimbursement plans.

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“…Furthermore, two-thirds of SB patients do not seek routine followup as young adults, despite an obvious need for ongoing comprehensive care to mitigate significant risks to their health. 5 In major U.S. centres, the concept of establishing regional "transitional" SB clinics for this adolescent and young adult (AYA) population has been suggested. 5 Major barriers exist to establishing such programs for SB in Ontario, including funding models for physicians and hospitals.…”

Section: Introductionmentioning

confidence: 99%

“…5 In major U.S. centres, the concept of establishing regional "transitional" SB clinics for this adolescent and young adult (AYA) population has been suggested. 5 Major barriers exist to establishing such programs for SB in Ontario, including funding models for physicians and hospitals. There is a disconnect of physician funding in the province, with pediatric specialists reimbursed on fixed alternative funding plans (AFP) and adult practitioners on a fee-for-service (FFS) basis.…”

Section: Introductionmentioning

confidence: 99%

“…This is exacerbated by a lack of expertise and interest to care for these patients by adult providers. 5 According to Ouyang et al, there are currently insufficient health services for age-appropriate care to meet the realistic demands for chronic care of patients with SB. 2 Novel, patient-centred approaches are necessary to address their complex needs, specifically urological and social, within the constraints of the current healthcare system.…”

Section: Introductionmentioning

confidence: 99%

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A proposed solution to a urological tightrope walk: The challenge of transition of spina bifida patients from pediatric to adult care in Ontario

Koyle¹,

Golda²,

Hillis³

et al. 2016

CUAJ

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Urologic Problems in Spina Bifida Patients Transitioning to Adult Care

Cited by 52 publications

References 9 publications

Lack of efficacy of an intradural somatic-to-autonomic nerve anastomosis (Xiao procedure) for bladder control in children with myelomeningocele and lipomyelomeningocele: results of a prospective, randomized, double-blind study

Lack of efficacy of an intradural somatic-to-autonomic nerve anastomosis (Xiao procedure) for bladder control in children with myelomeningocele and lipomyelomeningocele: results of a prospective, randomized, double-blind study

The transition process of spina bifida patients to adult-centred care: An assessment of the Canadian urology landscape

A proposed solution to a urological tightrope walk: The challenge of transition of spina bifida patients from pediatric to adult care in Ontario

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