With advances in diagnosis and treatment since the 1950s, the majority of individuals with hydrocephalus are living full and active lives. A major milestone for in a young adult living with hydrocephalus is the transition from pediatric to adult medical care. Each year in the US, an estimated 5000–6000 adolescents and young adults with hydrocephalus must move to the adult health care system, a process known as health care transition. This transition comes with significant challenges, ranging from negotiating the different processes and culture of adult care to the most significant being the ability for teens and young adults in our community to finding a neurosurgeon willing to take on their ongoing health care needs. That’s why in 2017, the Hydrocephalus Association held the first-ever Transition Summit.
The event brought together adult and pediatric neurosurgeons, neurologists, pediatricians and other medical professionals, health system administrators, patients, and parents to discuss solutions to improve transitional and longitudinal care for adolescents and young adults with hydrocephalus. The Transition Summit produced a set of consensus recommendations for improving transition and longitudinal care. These recommendations are detailed below in our Transition Initiative Action Plan, which the association will undertake over the coming months and years, to ensure that our young adult patient population receives the longitudinal care they need to lead healthy and supported lives.
The conclusions of the Summit are summarized in Williams MA, van der Willigen T, White P, Wood D, Cartwright C, “Improving Health Care Transition and Longitudinal Care for Adolescents and Young Adults with Hydrocephalus: Report from the Hydrocephalus Association Transition Summit,” which was published in the prestigious Journal of Neurosurgery. This paper also goes into more detail regarding recommendations relevant to neurosurgeons and neurologists and their professional societies.
Read our blog to learn more about the Transition Summit: Tackling Obstacles to Finding Care for Young Adults with Hydrocephalus: Summary of the 2017 Transition Summit
Transition Initiative Action Plan
|Primary Responsibility Area||Hospitals, Health Systems, and Practices||Professional Societies *||Hydrocephalus Association|
|Processes and infrastructure for
transition and longitudinal care
|1. Incorporate the Six Core Elements of Health Care Transition (HCT) into the existing patient care processes.
2. Provide appropriate resources to assist youth and their families through the HCT process.
3. Develop programs for HCT and longitudinal care for young adults with hydrocephalus, or if geographic and resource constraints prevent the development of such programs, develop relationships with other HCT and longitudinal care programs so that patients can receive appropriate care.
4. Ensure that all adults with hydrocephalus have access to a primary care medical home that has ready access to appropriate specialists to guide care management.
|1. Support the development of clinical practice guidelines for hydrocephalus at all stages of life.
2. Incorporate the Six Core Elements of Health Care Transition into clinical practice guidelines for patients with hydrocephalus, and encourage their adoption by pediatric and adult health care providers who provide care for patients with hydrocephalus.
3. Promote the development of programs for health care transition and longitudinal care for youth with hydrocephalus throughout the United States and Canada, or, where this is not feasible, support the incorporation of youth with hydrocephalus into existing health care transition programs.
4. Develop a HCT readiness assessment, medical summary/transfer record, and self-care assessment for youth with hydrocephalus.
|Training||Adult and Pediatric Neurosurgery and Neurology
1. Create learning objectives for pediatric and adult hydrocephalus within undergraduate medical education, and work with the AAMC to incorporate these objectives into the medical school curriculum nationally.
2. Develop curricular requirements for residency training via the ACGME for the physiology, pathophysiology, and treatment of hydrocephalus, and for health care transition, and include these topics in self-assessment examinations.
3. Include the topic of health care transition in board certification examinations.
4. Address the “hidden curriculum” that can create a culture within training and practice that adversely affects patients with hydrocephalus.
5. Provide Continuing Medical Education opportunities for hydrocephalus and health care transition.
6. Work with primary care professional societies to create educational products that will help primary care providers to participate in the care of youth and adults with hydrocephalus.
Nursing and Social Work
2. The SSWLHC should encourage universities with schools of Social Work to include transition to adulthood education into healthcare-related curriculum.
|Payment||1. Advocate for reassessment of the Relative Value Unites (RVUs) of surgical and medical care for patients with hydrocephalus so that reimbursement is commensurate with the effort required to provide this high value care.
2. Advocate for appropriate valuation of hydrocephalus treatment and longitudinal care in new payment models.
|Insurance||1. Advocate for the retention of existing legislative and regulatory provisions that allow children to remain on their parents’ insurance plan in early adulthood; prohibit insurers from discriminating against persons with pre-existing conditions; prohibit annual and lifetime limits on insurance payments; and require out of pocket spending limits|
|Research||1. Promote the funding of research in population health, health services, and health care economics of HCT and longitudinal care for youth with hydrocephalus, with the goal of providing data and economic models that can be used to assess the outcomes of different models of care.||1. Encourage the pediatric-focused Hydrocephalus Clinical Research Network (HCRN) and the Adult Hydrocephalus Clinical Research Network (AHCRN) to define common data elements, and develop mechanisms for patients enrolled in the HCRN to be followed in the AHCRN after the age of 18 so that a detailed picture of the health care services and outcomes across the lifespan can be developed and used to improve care.|
|Support and education of patients and families||1. Develop and keep up-to-date a roster of clinics, programs and physicians who provide HCT and adult care in hydrocephalus in the United States and Canada.
2. Develop and make available resources for health care transition specific for hydrocephalus.
3. Develop and disseminate information about health care transition for teenagers and young adults.
4. Promote the pursuit of an adult focused primary care medical home.
|Advocacy||1. Work with medical specialty societies, nurses’ organizations, hospital associations, national insurance associations, independent living associations, and disability rights groups to develop an advocacy agenda for HCT that can be implemented at federal, state and regional levels.|
|Follow Up||1. Convene a follow-up Transition Summit in about 2023.|
* 1/ Recommendations in the purview of professional societies in adult and pediatric neurosurgery and neurology are reflected in Williams MA, van der Willigen T, White P, Wood D, Cartwright C, “Improving Health Care Transition and Longitudinal Care for Adolescents and Young Adults with Hydrocephalus: Report from the Hydrocephalus Association Transition Summit”, Journal of Neurosurgery (forthcoming).