. 2023 Jun 21:1:100004.

doi: 10.1016/j.hctj.2023.100004. eCollection 2023.

Health status and health care utilization profiles of adolescents with disabilities

Shauna Kingsnorth^{1

2

3

4}, Yani Hamdani^{5

2

3

6}, Clare Cheng⁵, Sally Lindsay^{5

2

3}, Joanne Maxwell^{1

2}, Angela Colantonio^{2

3

7

8

9}, Mark Bayley^{7

9

10}, Colin Macarthur⁴

Affiliations

¹ Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
² Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.
³ Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada.
⁴ Child Health Evaluative Sciences, Hospital for Sick Children Research Institute, Toronto, ON, Canada.
⁵ Bloorview Research Institute, Toronto, ON, Canada.
⁶ Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health, Toronto, ON, Canada.
⁷ Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.
⁸ Canada Research Chair (Tier 1) in Traumatic Brain Injury in Underserved Populations, Canada.
⁹ ICES, Toronto, ON, Canada.
¹⁰ Division of Physical Medicine and Rehabilitation, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.

PMID: 39713020
PMCID: PMC11658434
DOI: 10.1016/j.hctj.2023.100004

Health status and health care utilization profiles of adolescents with disabilities

Shauna Kingsnorth et al. Health Care Transit. 2023.

. 2023 Jun 21:1:100004.

doi: 10.1016/j.hctj.2023.100004. eCollection 2023.

Authors

Affiliations

¹ Holland Bloorview Kids Rehabilitation Hospital, Toronto, ON, Canada.
² Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.
³ Rehabilitation Sciences Institute, University of Toronto, Toronto, ON, Canada.
⁴ Child Health Evaluative Sciences, Hospital for Sick Children Research Institute, Toronto, ON, Canada.
⁵ Bloorview Research Institute, Toronto, ON, Canada.
⁶ Azrieli Adult Neurodevelopmental Centre, Centre for Addiction and Mental Health, Toronto, ON, Canada.
⁷ Toronto Rehabilitation Institute, University Health Network, Toronto, ON, Canada.
⁸ Canada Research Chair (Tier 1) in Traumatic Brain Injury in Underserved Populations, Canada.
⁹ ICES, Toronto, ON, Canada.
¹⁰ Division of Physical Medicine and Rehabilitation, Faculty of Medicine, University of Toronto, Toronto, ON, Canada.

PMID: 39713020
PMCID: PMC11658434
DOI: 10.1016/j.hctj.2023.100004

Abstract

Background: Adolescents with physical disabilities of childhood often require a transition from pediatric to adult systems as part of life-long, comprehensive health care once they reach 18 years of age. The process of transition can be complex, challenging, and influenced by health-related factors and availability of health care resources.

Objective: To provide a baseline profile of health-related quality of life, health management, social participation, and health care utilization for adolescents 16 years of age with spina bifida (SB), acquired brain injury (ABI), or cerebral palsy (CP) in Toronto, Canada.

Methods: A cross-sectional survey design was used. A sample was drawn from a large, urban pediatric rehabilitation hospital as part of a prospective, longitudinal, observational mixed-methods study. Seven English language, paper-copy standardized measures were completed; measures were organized across the three domains of interest. Health care utilization data were obtained from population-based, health services administrative datasets held by ICES. These data included outpatient physician visits, emergency department visits, and hospitalizations over a 12-month period, beginning at their 16th birthday.

Results: The sample comprised 99 participants: survey measures were completed by 59 participants (12 SB, 19 ABI, and 28 CP) and health care utilization obtained for 92 participants (19 SB, 25 ABI, and 48 CP). Baseline scores across measures and rates of health care utilization are provided. All three groups reported relatively good health-related quality of life. Youth with CP had lower scores on health utility, health management, and social participation, compared with the SB and ABI groups. Youth with SB had slightly higher health care utilization in the 12-month period after their 16th birthday, compared with the ABI and CP groups.

Conclusions: This cross-sectional survey collected comprehensive health status and health care utilization data on 16-year-old youth with SB, ABI, and CP in Toronto, Canada. With few exceptions, the CP group consistently scored lower across measurement domains. These baseline data may be useful for hospital administrators, policy makers, and researchers examining changes in health-related quality of life, health management, social participation, and health care utilization among youth with SB, ABI, and CP, particularly in the context of transition planning and evaluation.

Keywords: Cross-sectional survey; Disability; Health care transition; Health care utilization; Health-related quality of life; Measures.

PubMed Disclaimer

Conflict of interest statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Cited by

An Examination of Health Care Transition Experiences Through Parents' Reflections About Their Sons or Daughters Who Have Intellectual and Developmental Disabilities.
Mirzaian CB, Smith R, Betz CL. Mirzaian CB, et al. Children (Basel). 2025 Jul 4;12(7):886. doi: 10.3390/children12070886. Children (Basel). 2025. PMID: 40723079 Free PMC article.

References

1. Young N.L., Wedge J., McCormick A., et al. The transition study: a look at youth and adults with cerebral palsy, spina bifida and acquired brain injury. Phys Occup Ther Pediatr. 2006;26(4):25–45. doi: 10.1080/J006v26n04_03. - DOI - PubMed
1. Mai C.T., Isenburg J.L., Canfield M.A., et al. National birth defects prevention network national population-based estimates for major birth defects, 2010–2014. Birth Defects Res. 2019;111(18):1420–1435. doi: 10.1002/bdr2.1589. [1] - DOI - PMC - PubMed
1. Durkin M.S., Benedict R.E., Christensen D., et al. Prevalence of cerebral palsy among 8-year-old children in 2010 and preliminary evidence of trends in its relationship to low birthweight. Paediatr Perinat Epidemiol. 2016;30(5):496–510. doi: 10.1111/ppe.12299. - DOI - PMC - PubMed
1. Dewan M.C., Mummareddy N., Wellons J.C., 3rd, Bonfield C.M. Epidemiology of global pediatric traumatic brain injury: qualitative review. World Neurosurg. 2016;91(497–509) doi: 10.1016/j.wneu.2016.03.045. - DOI - PubMed
1. Haak P., Lenski M., Hidecker M.J., Li M., Paneth N. Cerebral palsy and aging. Dev Med Child Neurol. 2009;51(4):16–23. doi: 10.1111/j.1469-8749.2009.03428.x. - DOI - PMC - PubMed

LinkOut - more resources

Full Text Sources
- Elsevier Science
- PubMed Central
Medical
- ClinicalTrials.gov
Miscellaneous
- NCI CPTAC Assay Portal

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Health status and health care utilization profiles of adolescents with disabilities

Affiliations

Health status and health care utilization profiles of adolescents with disabilities

Authors

Affiliations

Abstract

Conflict of interest statement

Similar articles

Cited by

References

LinkOut - more resources

Full Text Sources

Medical

Miscellaneous

Abstract

Conflict of interest statement

Similar articles

Cited by

References

Related information

LinkOut - more resources

Full Text Sources

Medical

Miscellaneous