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Healthcare transition in pediatric neurosurgery: lessons learned from a pilot program for patients with hydrocephalus
Megan G Anderson1, Prabhath Mannam1, Nathan K Leclair1
11Division of Neurosurgery, UConn School of Medicine, Farmington.
Insights
A formal healthcare transition program for pediatric neurosurgery patients with spina bifida or hydrocephalus improved the likelihood of establishing adult care. This pilot program showed a trend toward reduced resource utilization.
Area of Science:
- Neurosurgery
- Healthcare Management
- Pediatric Care
Background:
- Healthcare transition is crucial for pediatric neurosurgery patients moving to adult care.
- Formal transition programs are lacking in many pediatric neurosurgery settings.
- Spina bifida and hydrocephalus require lifelong management, highlighting the need for effective transition.
Purpose of the Study:
- To evaluate the preliminary experience of a formal pilot transition program.
- To compare patient outcomes between an informal and a formal transition program.
- To assess the success rate of establishing adult neurosurgical care.
Main Methods:
- Retrospective review of patients aged 18+ with spina bifida and/or hydrocephalus.
- Comparison of patients in an informal transition program (ITP) versus a formal transition program (FTP).
- Analysis of confirmed visits with adult neurosurgeons and resource utilization.
Main Results:
- 15 patients (68.2%) were in the FTP cohort, 7 (31.8%) in the ITP cohort.
- 86.7% of FTP patients confirmed adult neurosurgery visits vs. 57.1% of ITP patients.
- One patient in each cohort experienced transition challenges (failed transition or shunt revision).
Conclusions:
- Formal healthcare transition programs are essential but underdeveloped in pediatric neurosurgery.
- The pilot formal transition program demonstrated a higher success rate in establishing adult care.
- Formal transition may lead to more efficient resource utilization for patients with spina bifida and hydrocephalus.
Objective:
The pediatric neurosurgical community has increasingly recognized the importance of healthcare transition, the process of moving a patient from a pediatric to an adult model of care. However, surveys of pediatric neurosurgeons have revealed that few institutions have formal transition programs. Here, the authors share their preliminary experience with the development of a formal transition pilot program for patients with spina bifida and/or hydrocephalus.
Methods:
Patients 18 years of age or older with a diagnosis of spina bifida and/or hydrocephalus who were followed by a pediatric neurosurgeon at Connecticut Children's from January 2017 to December 2023 and were recommended to transition to an adult neurosurgeon were retrospectively reviewed. Patients in the informal transition program (ITP) cohort (i.e., the recommendation to transition was made before the formal transition program [FTP] was developed in early 2020) were compared with those in the FTP cohort.
Results:
Twenty-two patients met inclusion criteria with 7 (31.8%) in the ITP cohort and 15 (68.2%) in the FTP cohort. The median age at the time of the recommendation to transition was similar in both ITP and FTP cohorts (24 [IQR 20-35] years vs 25 [IQR 24-27] years, respectively). Four (57.1%) patients in the ITP cohort had a confirmed visit with an adult neurosurgeon, compared with 13 (86.7%) patients in the FTP cohort (p = 0.274). One patient in the ITP cohort with a failed transition returned to pediatric neurosurgical care, and 1 patient in the FTP cohort required a shunt revision by an adult neurosurgeon within 1 year of the recommendation to transition.
Conclusions:
Healthcare transition is recognized as a priority within pediatric neurosurgery, but structured, formal transition programs remain underdeveloped. The authors' preliminary experience with a pilot transition program demonstrated that patients who underwent a formal transition were more likely to successfully establish care with an adult neurosurgeon and trended toward less resource utilization.
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