The Challenges of Transitioning to Adult Care
With advances in diagnosis and treatment since the 1950s, the majority of individuals with hydrocephalus are transitioning into adulthood. This transition comes with significant challenges: teens and young adults in our community face difficulty finding a neurologist or neurosurgeon willing to manage their care.
The medical community is now taking notice of the large disparity between child and adult care. Joseph H. Piatt Jr., MD is a member of HA’s medical advisory board and a pediatric neurosurgeon at A. I. duPont Hospital for Children in Wilmington, Delaware. Dr. Piatt recently published an article in the Journal of Neuroscience highlighting the issues of medical care in the adult hydrocephalus population, specifically adults who have spina bifida with hydrocephalus.
Dr. Piatt looked at admission rates, hospital costs, and complication rates for adult patients who have spina bifida with hydrocephalus. The data for the study was extracted from Nationwide Inpatient Sample (NIS). Dr. Piatt’s results showed an increasing trend in hospital admission rates and costs, emphasizing the frequent complications experienced by hydrocephalus patients and outlining why it is so important that they have access to proper long term care. Dr. Piatt also found alarming discrepancies between care in low-volume and high-volume hospitals. Low-volume hospitals had a greater number of hospital acquired conditions (HACs), such as surgical site infections, and deaths after surgery and a much lower number of discharges to home than high-volume hospitals. Dr. Piatt points out that high-volume, multi-disciplinary clinics have long been available to the pediatric population. Since the adult population who have spina bifida with hydrocephalus is increasing faster than the overall US population, Dr. Piatt suggests that the development of such clinics for adults is critical.
HA has long been aware of inequality in care for children and adults with hydrocephalus, and we are taking steps to bridge the gap. Friday and Saturday (February 17-18, 2017), HA is hosting the Hydrocephalus Association Transition Summit to discuss ways of improving the transition from pediatric to adult medical care for hydrocephalus patients. Topics will range from the needed systemic changes to and efforts of healthcare professional societies, patient advocacy organizations, health systems, payers, and governmental agencies to changes that can be made at a local level through the adoption of best practices. This will all culminate in a white paper delineating a national plan of action and setting measurable goals to be met within the 5-10 years.
For a link to Dr. Piatt’s article, please click here.