Clinic Helps Young Adults With Spina Bifida Transition to Adulthood
Nick Owens, a former Youth Advisory Council
member for The Children's Hospital (pictured with
Jeff Sandstrum from Assistive Technologies),
regularly attends Children's Young Adults Spinal
Defects Clinic.
from Caring For Our Future, Fall 2005
By Lori Yacone, BSN, RN
The diagnosis of spina bifida has traditionally been considered a pediatric one. In the past, children born with spina bifida, a de fect where the spinal column doesn’t close completely, often did not survive past childhood due to the complexities of the disease. Usually families did not have to concern themselves with finding medical care for their child with spina bifida beyond early adolescence since these children did not survive beyond that age.
Medical care has become so advanced and sophisticated that chronically ill pediatric patients with spina bifida are living well into their adult years. The problem lies in the fact that there are few, if any, adult-care facilities with clinics or practitioners to care for these patients when they grow into adulthood. Nationally, there is a growing concern in the pediatric, adolescent and young-adult chronically ill patient populations. What happens to the patients with chronic childhood diseases when they can no longer be treated at a pediatric facility because they are too old?
Today, many children with spina bifida are not just surviving – they are thriving. With this increase in life span comes the new concern of transitioning these patients to adult providers who can take into consideration the adult issues of independence while continuing to meet the medical needs of this population.
Anne Ritchie, RN, BSN, who managed the pediatric Spinal Defects Clinic (SDC) at The Children’s Hospital in the late 1990s, envisioned the first “adult” spina bifida clinic at Children’s. The plans for an adult Spinal Defects Clinic were initiated in 2001. Because the format for the pediatric clinic had been so successful, the adult clinic was set up in a similar fashion. The first Young Adult Spinal Defects Clinic was held in October of 2002.
This multidisciplinary clinic is coordinated by the Rehabilitation nurse clinician, and the team includes providers from neurosurgery, urology, physical therapy, social work, genetics, nursing and psychiatry. Because most spina bifida patients’ orthopedic needs have been addressed during childhood and adolescence, orthopedics providers are not routinely included in this clinic.
The clinic meets three to four times every year; patients are seen every other year. An annual renal ultrasound is recommended for each of these patients. Fifty-five to 60 young adults are followed in the Young Adult SDC. Patients in this clinic, like the clinics for younger children, socialize and meet young adults and families with similar concerns. This alone helps make the long clinic visits more enjoyable.
Nick Owens as a child with spina bifida, a neural
tube birth defect that happens in the first month of
pregnancy when the spinal column doesn't close
completely.
The Young Adult SDC focuses on the needs of older adolescent and young adult patients. These needs are complex. These young adults need help transitioning to college, to living on their own or in nursing-home care, into the work force, into vocational rehab or into group homes. These patients have issues around sexuality, procreation and genetics counseling, just to name a few. They have adult needs, but they also have disabilities. Young adults with these complex needs face the challenges of navigating insurance and the health-care system. It is a complicated picture for most of these patients and families. The learning disabilities that many of these young adults have also can make their everyday lives more complex.
The ultimate goal is to transfer this clinic to the adult rehab department at University Hospital when Children’s moves to its new hospital on the Fitzsimons campus in the fall of 2007. The care providers in the current Spinal Defects Clinic will be working with the health-care providers from the University over the next two years to prepare them for the move. Major components of transitioning these young adults include:
- Establishing independence and autonomy in the role of self-care responsibilities.
- Accepting ownership of the complicated and multifaceted nature of this medical diagnosis.
- Increasing awareness in the community of young adults with spina bifida.
- Addressing the medical, psychological and social needs of this population in the adult primary-care areas.
- Providing a multidisciplinary clinic to address the specialized needs of this population.
Until now, there has been no continuity of care for these young adults. Some of these patients still don’t have primary-care providers. These patients have trouble finding primary-care providers who take Medicare insurance and who also are willing to take on the complications of a young adult with spina bifida.
The nurses in this clinic will continue to network in the community with adult primary-care providers and be a support system for them. Navigating the health-care system also continues to be a major concern and source of frustration for patients and families. The clinic nurses provide suggestions and expertise to make this process easier and to create self-sufficient young adults.
Nurses can help with the transition process in innovative ways. It is exciting to help adult health-care providers feel more comfortable caring for patients with what have been considered to be “childhood diseases.” It is also exciting to see the successes achieved by this patient population in the less-protected environment of the community. This model for transition of care can be implemented with other young-adult populations who are surviving into adulthood.
