Current Status of Transition Preparation Among Youth With Special Needs in the United States
Abstract
Objective To examine current US performance on transition from pediatric to adult health care and discuss strategies for improvement. Methods The 2009-2010 National Survey of Children with Special Health Care Needs is a nationally representative sample with 17 114 parent respondents who have youth with special health care needs (YSHCN) ages 12 and 18. They are asked about transition to an adult provider, changing health care needs, increasing responsibility for health care needs, and maintaining insurance coverage. We analyzed the association of selected characteristics with successful transition preparation. Results Overall, 40% of YSHCN meet the national transition core outcome. Several factors are associated with transition preparation, including female gender; younger age; white race; non-Hispanic ethnicity; income ≥400% of poverty; little or no impact of condition on activities; having a condition other than an emotional, behavioral, or developmental condition; having a medical home; and being privately insured. Conclusions Most YSHCN are not receiving needed transition preparation. Although most providers are encouraging YSHCN to assume responsibility for their own health, far fewer are discussing transfer to an adult provider and insurance continuity. Although changes in sample design limit trend analysis, there have been no discernible improvements since this transition outcome was measured in the 2005-2006 National Survey of Children with Special Health Care Needs. T…
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There is little empirical data on which policies can be used for transition in chronic illness.
“Still, there is little empirical data on which policies can be used (153).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [153]
Although there is little evidence, as for other diseases, building a good relationship between the young adult and the treating medical team may be relevant to ensure good management of the disease.
“Furthermore, although there is little evidence, as for other diseases, building a good relationship between the young adult and the treating medical team may be relevant to ensure good management of the disease (153).”
From ESPGHAN Position Paper on Management and Follow-up of Children and Adolescents With Celiac Disease. (2022) · cites this paper as [153]
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Chisolm, D. J., Keedy, H. E., Hart, L. C., Chavez, L. J., Dolcé, M., Morack, J., Grannis, C., & Kelleher, K. J. (2021) · Journal of Adolescent Health · doi:10.1016/j.jadohealth.2021.03.023 · Cited by 28 · see citing works
Sparud‐Lundin, C., Berghammer, M. C., Moons, P., & Bratt, E. (2017) · BMC Health Services Research · doi:10.1186/s12913-017-2192-5 · Cited by 26 · see citing works
Social and Structural Drivers of Health and Transition to Adult Care
Bailey, K., Avolio, J., Lo, L., Gajaria, A., Mooney, S., Greer, K., Martens, H., Tami, P., Pidduck, J., Cunningham, J., et al. (2023) · PEDIATRICS · doi:10.1542/peds.2023-062275 · Cited by 28 · see citing works
Fishman, L. N., Ziniel, S. I., Adrichem, M. E., Fernandes, S. M., & Arnold, J. H. (2014) · Journal of Pediatric Gastroenterology and Nutrition · doi:10.1097/mpg.0000000000000405 · Cited by 25 · see citing works
Transition of Children with Neurological Disorders
Tilton, A. H. (2018) · Current Neurology and Neuroscience Reports · doi:10.1007/s11910-018-0822-x · Cited by 25 · see citing works
Williams, M. A., van der Willigen, T., White, P. H. P., Cartwright, C. C., Wood, D. L., & Hamilton, M. G. (2019) · Journal of neurosurgery · doi:10.3171/2018.6.jns188 · Cited by 25 · see citing works
Ciccarelli, M. R., Gladstone, E. B., & Richardson, E. A. (2015) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2015.07.003 · Cited by 25 · see citing works
Transition From Pediatric to Adult Neurologic Care
Tilton, A. H., & de Gusmão, C. M. (2018) · CONTINUUM Lifelong Learning in Neurology · doi:10.1212/con.0000000000000570 · Cited by 25 · see citing works
A Health Care Transition Curriculum for Primary Care Residents: Identifying Goals and Objectives
Kuo, A. A., Ciccarelli, M. R., Sharma, N., & Lotstein, D. S. (2018) · PEDIATRICS · doi:10.1542/peds.2016-4300l · Cited by 25 · see citing works
Self-citationColler, R. J., Ahrens, S., Ehlenbach, M. L., Shadman, K. A., Chung, P. J., Lotstein, D. S., LaRocque, A., & Sheehy, A. M. (2018) · Journal of Hospital Medicine · doi:10.12788/jhm.2923 · Cited by 24 · see citing works
Self-citationWiemann, C. M., Graham, S. C., Garland, B. H., Hergenroeder, A. C., Raphael, J. L., Sanchez-Fournier, B. E., Benavides, J. M., & Warren, L. J. (2019) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2019.05.013 · Cited by 23 · see citing works
Zupanc, M. L. (2020) · Seminars in Pediatric Neurology · doi:10.1016/j.spen.2020.100853 · Cited by 23 · see citing works
- Authors
- McManus, M. A., Pollack, L. R., Cooley, W. C., McAllister, J. W., Lotstein, D., Strickland, B., & Mann, M. Y.
- Affiliations
- The National Alliance to Advance Adolescent Health, Washington, DC;
- The National Health Care Transition Center, Concord, New Hampshire;
- University of California, Los Angeles (US)
- Health Resources and Services Administration (US)
- Venue
- Pediatrics
- Publisher
- American Academy of Pediatrics (AAP)
- Published
- 2013-06-01
- Volume
- 131
- Issue
- 6
- Pages
- 1090-1097
- ISSN
- 0031-4005 (ISSN-L)
- 1098-4275
- OpenAlex
- W1996390031
- Cited by
- 261
- References
- 9
- Citations by year
- 2026: 7 · 2025: 16 · 2024: 13 · 2023: 11 · 2022: 12 · 2021: 16 · 2020: 22 · 2019: 23 · 2018: 41 · 2017: 23 · 2016: 22 · 2015: 26 · 2014: 25 · 2013: 2 · 2012: 1
- FWCI
- 57.39
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- PEDIATRICS (publishedVersion)
- PubMed (publishedVersion)
- Funders
- U.S. Public Health Service (U39MC18176)
- Maternal and Child Health Bureau
- Topics
- Health Sciences › Health Professions › Speech and Hearing › Adolescent and Pediatric Healthcare
- Health Sciences › Health Professions › General Health Professions › Child and Adolescent Health
- Health Sciences › Medicine › Emergency Medicine › Hospital Admissions and Outcomes
- Keywords
- transition to adult care, youth with special health care needs, transition preparation, patient-centered medical home, health care needs, National Survey of Children with Special Health Care Needs, health disparities
- MeSH terms
- Adolescent, Adult, Child, Child Health Services, Continuity of Patient Care, Female, Humans, Male, Socioeconomic Factors, United States, Health Care Surveys, Children with Disabilities, Disabled Children, Needs Assessment, Transition to Adult Care
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