Urologic Care of Adults With Spina Bifida Aaron D. Martin, MD, MPH, and Michael Ritchey, MD Corresponding author Michael Ritchey, MD Department of Urology, Mayo Clinic Arizona, 1920 East Cambridge Avenue, Suite 302, Phoenix, AZ 85006, USA. E-mail: michael.ritchey@gmail.com Current Bladder Dysfunction Reports 2009, 4: 185–191 Current Medicine Group LLC ISSN 1931-7212 Copyright © 2009 by Current Medicine Group LLC An increasing number of adults with spina bi fda will require urologic care in the future. Transition of their urologic care to adult urologists will not be an easy task. Few centers have multidisciplinary clinics for adult patients, who will need surveillance to detect changes in bladder function and prevent renal deterioration. They will also require monitor- ing for late complications of neurogenic bladder dysfunction, particularly those who have undergone prior bladder reconstruction. Introduction Urologic care of patients with spina bi fda begins at birth and continues throughout life. Most of the early treatment of children is provided in multidisciplinary clinics with the involvement of many medical and sur- gical specialists dedicated to managing this complex birth defect. Thanks to improvements in medical care during the past few decades, more than 85% of these patients now survive into adulthood [1]. The overall incidence of spina bi fda has been decreasing in recent years because of supplemental folate for pregnant women and selective termination of affected fetuses [2]. Despite this decline, urologists will be expected to care for more adult patients in the coming years. Although these patients share some similarities with other adults with neurogenic bladder dysfunction, many aspects of their care are unique. One example is the late effect of treatments initiated in childhood (eg, enterocysto- plasty), which can result in potentially life-threatening complications later in life [3,4]. Urologists treating adults will also have to address concerns regarding sexual function and fertility—issues not usually addressed by their pediatric colleagues. This review focuses on these challenges and outlines recommenda- tions for follow-up and treatment. Transition of Care As patients with spina bifda progress from adolescence to adulthood, there is a need to transition care to adult specialists [1,5]. Many pediatric surgeons, medical specialists, and pediatricians continue to care for these individuals until age 21 years or beyond. Even when a decision is made to make the transition, fnding physicians willing and able to care for adult patients with complex birth defects and special needs can be very challenging. Many barriers exist [5]: • The patient may be unwilling to change from a pro- vider with whom he or she has had a long relationship. • The parents may be reluctant to relinquish control over their child’s medical decision making. • There is a notable lack of adult multidisciplinary clinics to coordinate care for these patients. Fur- thermore, those that exist may not have adequate resources or expertise in managing this population. • Most of these patients are covered by state- or government-sponsored health insurance plans. Unfortunately, few adult providers participate in these plans. Also, some of these patients lose their insurance eligibility when they become adults. This problem is underscored by the fact that less than 30% are employed full time [1]. Many of these patients continue to reside with their parents. • Many adult spina bifda patients depend on others to provide essentials of daily living, medical care, and transportation. Clinical Presentation Children and adults with spina bifda have signifcant problems with urinary incontinence and recurrent urinary tract infections. The prevalence of incontinence in adults varies depending on prior urologic interventions in child- hood. There is now almost universal “early” intervention with clean intermittent catheterization (CIC) and pharma- cologic treatment, particularly for patients with an elevated detrusor leak point pressure [6,7]. However, many patients remain wet despite these interventions. Verhoef et al. [8] evaluated 179 young adults with spina bifda in the Neth- erlands. Urinary and fecal incontinence were identifed in