Health care transition in pediatric neurosurgery: a consensus statement from the American Society of Pediatric Neurosurgeons

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  • 1 Department of Neurosurgery, University of Alabama at Birmingham, Children’s of Alabama, Birmingham, Alabama;
  • 2 Department of Pediatric Neurosurgery, University of Texas Southwestern Medical Center, Dallas, Texas;
  • 3 Division of Neurosurgery, Hospital for Sick Children, Toronto, Ontario, Canada;
  • 4 Department of Clinical Neurosciences, University of Calgary, Alberta, Canada;
  • 5 Departments of Neurology and
  • 6 Neurological Surgery, University of Washington School of Medicine, Seattle, Washington;
  • 7 The National Alliance to Advance Adolescent Health and Got Transition, Washington, DC;
  • 8 American Association of Neurological Surgeons/Congress of Neurological Surgeons Washington Office, Washington, DC; and
  • 9 Department of Surgery, Division of Neurosurgery, Connecticut Children’s Medical Center, Hartford, Connecticut
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OBJECTIVE

The number of children with complex medical conditions surviving to adulthood is increasing. A planned transition to adult care systems is essential to the health maintenance of these patients. Guidance has been established for the general health care transition (HCT) from adolescence to adulthood. No formal assessment of the performance of pediatric neurosurgeons in HCT has been previously performed. No “best practice” for this process in pediatric neurosurgery currently exists. The authors pursued two goals in this paper: 1) define the current state of HCT in pediatric neurosurgery through a survey of the membership of the American Society of Pediatric Neurosurgeons (ASPN) on current methods of HCT, and 2) develop leadership-endorsed best-practice guidelines for HCT from pediatric to adult neurosurgical health care.

METHODS

Completion of the Current Assessment of Health Care Transition Activities survey was requested of 178 North American pediatric neurosurgeons by using a web-based questionnaire to capture HCT practices of the ASPN membership. The authors concurrently conducted a PubMed/MEDLINE–based literature review of HCT for young adults with special health care needs, surgical conditions, and/or neurological conditions for the period from 1990 to 2018. Selected articles were assembled and reviewed by subject matter experts and members of the ASPN Quality, Safety, and Advocacy Committee. Best-practice recommendations were developed and subjected to peer review by external expert groups.

RESULTS

Seventy-six responses to the survey (43%) were received, and 62 respondents (82%) answered all 12 questions. Scores of 1 (lowest possible score) were recorded by nearly 60% of respondents on transition policy, by almost 70% on transition tracking, by 85% on transition readiness, by at least 40% on transition planning as well as transfer of care, and by 53% on transition completion. Average responses on all core elements were < 2 on the established 4-point scale. Seven best-practice recommendations were developed and endorsed by the ASPN leadership.

CONCLUSIONS

The majority of pediatric neurosurgeons have transition practices that are poor, do not meet the needs of patients and families, and should be improved. A structured approach to transition, local engagement with adult neurosurgical providers, and national partnerships between pediatric and adult neurosurgery organizations are suggested to address current gaps in HCT for patients served by pediatric neurosurgeons.

ABBREVIATIONS ASPN = American Society of Pediatric Neurosurgeons; HCT = health care transition.

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Contributor Notes

Correspondence Jonathan E. Martin: University of Connecticut School of Medicine, Connecticut Children’s Medical Center, Hartford, CT. jmartin03@connecticutchildrens.org.

INCLUDE WHEN CITING Published online February 14, 2020; DOI: 10.3171/2019.12.PEDS19524.

Disclosures Dr. Hamilton is a consultant for Integra Canada.

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