Recently at our hospital, one of our pediatric urologists received a life-changing diagnosis and had to immediately stop patient care. This provider had chosen not to transition most of his more complex patients with congenital conditions, which had been a point of frustration as we worked to build our institution’s transition clinic. However, as we struggled to quickly transition over 100 patients, the reasons for this became apparent. We, too, learned the multifactorial barriers to transition.

Consider one of his patients who recently came to our clinic. Maria (real name changed) is a 29-year-old woman with cloacal malformation status post bladder augmentation, bladder neck closure, Malone antegrade continence enema, Mitrofanoff, short gut syndrome, gastrostomy tube dependence, and pulmonary hypoplasia who presented to our adult emergency department with weakness. Since birth, Maria was followed by multidisciplinary providers at the pediatric hospital who knew her and her family, understood her complex condition, and involved both her and her family in decision-making. At school and subsequently a state-funded young adult program, she had services such as physical therapy, occupational therapy, and a paraprofessional to help oversee catheterization. Maria eventually gained the ability to self-catheterize with oversight.

When Maria tried to find a part-time job at 26, no employers were willing to accommodate her needs. She also needed to qualify for disability coverage, which further limited her ability to find a job due to hour and compensation restrictions. She aged out of state-supported insurance, leading to a gap in urologic care and coverage for catheters. Maria’s mother was working two jobs, leaving no one at home to oversee catheterizing. Without the socialization, stimulation, and sense of purpose provided, Maria developed depression, further inhibiting her medical self-care.

In the emergency department, a urine specimen was needed. At Mom and Maria’s strong objection, the emergency department providers attempted to catheterize Maria per urethra, assuming they understood anatomy best. During the subsequent admission to the adult hospital for urosepsis, bladder stones, and constipation, Mom and Maria continuously had to advocate for her needs, finding that providers did not understand her condition and mandated inappropriate changes to her long-standing medical regimens.

After the hospitalization, Maria presented to the multidisciplinary transition clinic. Although it was a relief to find providers who understood her condition, they described how hard it was to let go of their lifelong pediatric providers who literally knew her inside and out. They felt the clinic was far more sterile, with staff and providers often either talking only to Maria and ignoring Mom or vice versa. The approach was matter-of-fact, with shorter visits and less time spent trying to get to know the family and to explain test findings or management options. Additionally, no child life specialist was available to help Maria cope with her test anxiety.

Perhaps Maria and her mother’s greatest frustration was her bowel management. The adult urology clinic did not support Malone antegrade continence enema management, and they were referred to a colorectal surgeon. Maria was informed that the only option they could offer was a colostomy, something she desperately wants to avoid. No adult gastroenterologist was willing to follow her due to their lack of familiarity with her condition.

As more adolescents with complex urologic histories are entering adulthood, this story has become the norm.¹ Providers, medical systems, and our society need to do better. It is critical that our focus is not just on providing for these patients’ medical care needs. We need to approach the care of those physical needs in the context of their neuropsychological profile (eg, executive functioning limitations, depression, and anxiety), the concurrent social changes (eg, isolation and lack of daily routine after graduating), and policy/societal barriers (eg, lack of funding for day programs, lack of support services provided). Several suggestions are provided here.

Provider-Level Suggestions. Pediatric providers need to better prepare families regarding transition. Ideally, transition clinics incorporating both the pediatric and adult providers could help families feel more comfortable with the transition.² Adult providers should promote patient autonomy while also incorporating the family, as appropriate. Tailoring explanations and plans to patients’ neurocognitive profiles, as possible, would be ideal. We also need to find primary care and subspecialty adult providers to care for pediatric conditions, particularly those who will manage patients with neurogenic bowel. Fecal incontinence, compared to urinary incontinence, is far more bothersome and limits patients both socially and in achieving employment.³

Hospital-Level Suggestions. Supporting multidisciplinary transition clinics is both the recommended and most evidence-based effective strategy for improving patient outcomes and follow-up.² Although often considered a profit loss, they have great potential for long-term revenue. Ideally, these clinics will incorporate not just surgical providers but also primary care providers, social workers, and neuropsychologists. An “adult life specialist” position needs to be created and incorporated into these clinics. A care coordinator for the clinic is essential. It can be especially effective if that coordinator is present at both the pediatric and adult clinics, serving as the “constant” amid great change.⁴

Policy Suggestions. Policy change is desperately needed to better support this growing population of these vulnerable adolescents and young adults. Namely, far greater reimbursement is needed to incentivize the care of such highly complex patients. Hospital systems and providers will not adapt until they are financially incentivized to do so. Adult day programs for adults with disabilities of all ages as well as better support services for these adults are greatly needed. Providers should get involved in advocacy as able or support those organizations that are advocating for patients (eg, the Spina Bifida Association). Partnering with other providers and groups who are facing similar concerns (eg, support groups for patients with other chronic conditions such as cystic fibrosis, congenital heart disease, and autism) may be an effective strategy.

This change is not simple. But the need is both desperate and immediate.