Introduction
Youth with special healthcare needs have low rates of healthcare transition services,
which can affect lifelong functioning and quality of life. This study examines the
variations in receipt of healthcare transition services among youth with special healthcare
needs.
Methods
Data from the 2016–2018 National Survey of Children's Health (N=102,341) were analyzed
in 2021. Receipt of healthcare transition services by youth with select health conditions
was compared with youth with other special healthcare needs. Bivariate and multivariable
analyses assessed the associations between the receipt of healthcare transition services,
sociodemographic characteristics, and health conditions.
Results
Among youth with special healthcare needs, the prevalence of receiving healthcare
transition services was lowest among youth with speech or other language disorders
(8.5%), intellectual disabilities (9.4%), and autism spectrum disorder (11.1%). Low
prevalence of receiving healthcare transition services was also observed for youth
with developmental delays (12.6%), learning disabilities (14.2%), and behavior or
conduct problems (15.5%). Youth with developmental delays (AOR=0.70, 95% CI=0.52,
0.95), intellectual disabilities (AOR=0.45, 95% CI=0.26, 0.78), learning disabilities
(AOR=0.77, 95% CI=0.60, 0.99), autism spectrum disorder (AOR=0.60, 95% CI=0.41, 0.86),
and speech or other language disorders (AOR=0.48, 95% CI=0.32, 0.72) had lower odds
of receiving healthcare transition services than youth with other special healthcare
needs.
Conclusions
Findings suggest that the receipt of healthcare transition services varies substantially
by the type of chronic health condition and highlight the need for increased healthcare
transition services for youth with special healthcare needs, especially for youth
with neurodevelopmental disabilities and speech or other language disorders.
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to American Journal of Preventive MedicineAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
REFERENCES
- Supporting the health care transition from adolescence to adulthood in the medical home.Pediatrics. 2011; 128: 182-200https://doi.org/10.1542/peds.2011-0969
- A consensus statement on health care transitions for young adults with special health care needs.Pediatrics. 2002; 110: 1304-1306
Six core elements of health care transition. Got transition. https://www.gottransition.org/six-core-elements/. Updated 2020. Accessed September 17, 2020.
- Supporting the health care transition from adolescence to adulthood in the medical home.Pediatrics. 2018; 142 ([published correction appears in Pediatrics. 2019;143(2):e20183610])e20182587https://doi.org/10.1542/peds.2018-2587
Maternal & Child Health Topics: Improving the Lives of Children and Youth with Special Health Care Needs (CYSHCN). Maternal & Child Health Bureau, HRSA. https://mchb.hrsa.gov/maternal-child-health-topics/children-and-youth-special-health-needs#ref1. Updated 2021. Accessed September 4, 2020.
National Survey of Children's Health (NSCH) datasets U.S. Census Bureau. https://www.census.gov/programs-surveys/nsch/data.html. Updated 2021. Accessed February 10, 2021.
- Transition planning among U.S. youth with and without special health care needs.Pediatrics. 2018; 142e20180194https://doi.org/10.1542/peds.2018-0194
- Current status of transition preparation among youth with special needs in the United States.Pediatrics. 2013; 131: 1090-1097https://doi.org/10.1542/peds.2012-3050
- Lack of preparedness for pediatric to adult-oriented health care transition in hospitalized adolescents and young adults.Acad Pediatr. 2018; 18: 102-110https://doi.org/10.1016/j.acap.2017.07.008
- Health care transition for youth with special health care needs.J Adolesc Health. 2012; 51: 213-219https://doi.org/10.1016/j.jadohealth.2012.01.007
- Disparities in transition planning for youth with autism spectrum disorder.Pediatrics. 2013; 131: 447-454https://doi.org/10.1542/peds.2012-1572
- Support for transition from adolescent to adult health care among adolescents with and without mental, behavioral, and developmental disorders - United States, 2016-2017.MMWR Morb Mortal Wkly Rep. 2020; 69 ([published correction appears in MMWR Morb Mortal Wkly Rep. 2020;69(43):1611]): 1156-1160https://doi.org/10.15585/mmwr.mm6934a2
- Transition to adult health care and the need for a pregnant pause.Pediatrics. 2019; 143e20190541https://doi.org/10.1542/peds.2019-0541
- Access to a youth-specific service for young adults with type 1 diabetes mellitus is associated with decreased hospital length of stay for diabetic ketoacidosis.Intern Med J. 2018; 48: 396-402https://doi.org/10.1111/imj.13649
- Outcome evidence for structured pediatric to adult health care transition interventions: a systematic review.J Pediatr. 2017; 188 (e15): 263-269https://doi.org/10.1016/j.jpeds.2017.05.066
- Health care transition services for youth with autism spectrum disorders: perspectives of caregivers.Pediatrics. 2016; 137: S158-S166https://doi.org/10.1542/peds.2015-2851N
- Perceptions of health care transition care coordination in patients with chronic illness.Pediatrics. 2018; 141e20173168https://doi.org/10.1542/peds.2017-3168
- Preparing adolescents with heart problems for transition to adult care, 2009–2010 National Survey of Children with special health care needs.Congenit Heart Dis. 2017; 12: 497-506https://doi.org/10.1111/chd.12476
- The medical home and health care transition for youth with autism.Pediatrics. 2018; 141: S328-S334https://doi.org/10.1542/peds.2016-4300J
- Healthcare transition for youth with heart disease: a clinical trial.Heart. 2014; 100: 1113-1118https://doi.org/10.1136/heartjnl-2014-305748
- Outcomes of pediatric to adult health care transition interventions: an updated systematic review.J Pediatr Nurs. 2020; 51: 92-107https://doi.org/10.1016/j.pedn.2020.01.002
- Health care transition planning among youth with ASD and other mental, behavioral, and developmental disorders.Matern Child Health J. 2020; 24 ([published correction appears in Matern Child Health J. 2020;24(6):806]): 796-804https://doi.org/10.1007/s10995-019-02858-6
- Health status and health care use among adolescents identified with and without autism in early childhood - four U.S. sites, 2018-2020.MMWR Morb Mortal Wkly Rep. 2021; 70: 605-611https://doi.org/10.15585/mmwr.mm7017a1
NSCH survey methodology. Data Resource Center for Child & Adolescent Health. https://www.childhealthdata.org/learn-about-the-nsch/methods. Updated 2021. Accessed September 6, 2021.
The Child & Adolescent Health Measurement Initiative (CAHMI), 2018 National Survey of Children's Health: Child and Family Health Measures, National Performance and Outcome Measures, and Subgroups, SAS Codebook, version 1.0. Baltimore, MD: Data Resource Center for Child & Adolescent Health, The Child & Adolescent Health Measurement Initiative (CAHMI). www.childhealthdata.org. Published 2020. Accessed March 26, 2021.
Child and adolescent health measurement initiative. Title V Maternal and Child Health Services Block Grant Measures Content Map, 2017and 2018National Survey of Children's Health. Data Resource Center for Child and Adolescent Health, supported by Cooperative Agreement U59MC27866 from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). www.childhealthdata.org. Updated July 22, 2019. Accessed September 21, 2020.
- Children with cerebral palsy and unmet need for care coordination.J Dev Behav Pediatr. 2021; 42: 605-612https://doi.org/10.1097/DBP.0000000000000950
- Planning for health care transitions: results from the 2005–2006 National Survey of Children With Special Health Care Needs.Pediatrics. 2009; 123: e145-e152https://doi.org/10.1542/peds.2008-1298
- Applied Survey Data Analysis.CRC Press, Boca Raton, FL2010
- Erdie-Lalena CR. Disparities in access to healthcare transition services for adolescents with Down syndrome.J Pediatr. 2018; 197: 214-220https://doi.org/10.1016/j.jpeds.2018.01.072
- Barriers to transition from pediatric to adult care: a systematic review.J Pediatr Psychol. 2018; 43: 488-502https://doi.org/10.1093/jpepsy/jsx142
- A study of physician knowledge and experience with autism in adults in a large integrated healthcare system.J Autism Dev Disord. 2015; 45: 4002-4014https://doi.org/10.1007/s10803-015-2579-2
- Pediatric to adult-care transitions in childhood-onset chronic disease: hospitalist perspectives.J Hosp Med. 2013; 8: 627-630https://doi.org/10.1002/jhm.2091
- Physician views on barriers to primary care for young adults with childhood-onset chronic disease.Pediatrics. 2010; 125: e748-e754https://doi.org/10.1542/peds.2008-3451
- Residency training in transition of youth with childhood-onset chronic disease.Pediatrics. 2010; 126: S190-S193https://doi.org/10.1542/peds.2010-1466P
- Child health and health care quality measures from the NSCH and NS-CSHCN endorsed for use by the national quality forum.Data Resource Center for Child & Adolescent Health, The Child & Adolescent Health Measurement Initiative (CAHMI), Baltimore, MD2020 (Published 2011. Accessed August 26, 2021)
Article Info
Publication History
Published online: December 20, 2021
Identification
Copyright
© 2021 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.
