Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Aug 23:2:100067.
doi: 10.1016/j.hctj.2024.100067. eCollection 2024.

Health care transition quadruple aim outcomes for IDD: Scoping review

Ellen Fremion  1 , Kathleen Irby  2 , Sophia Jan  3 , Carlie Stein Somerville  4 , Susan Shanske  5 , Dava Szalda  6 , Ahmet Uluer  7 , Parag Shah  8
Affiliations

Health care transition quadruple aim outcomes for IDD: Scoping review

Ellen Fremion et al. Health Care Transit. .

Abstract

Purpose: Structured HCT models addressing planning, transfer, and integration into adult care for adolescents and young adults with childhood-acquired chronic conditions are becoming more prevalent. However, consensus on outcome measures to assess health care transition (HCT) interventions particularly for intellectual and developmental disabilities (IDD) population is lacking. This scoping review identified potential HCT outcome measures for young adults (aged 18-26) with IDD using the Quadruple Aim Framework.

Methods: On August 6, 2021 and April 27, 2023, Medline Ovid, Embase, Web of Science, PsycINFO, and Cochrane databases were searched using the terms "young adult," "intellectual disability," "developmental disability, "cognitive dysfunction," "autism," "cerebral palsy," "spina bifida," and "transition to adult care." Searches were limited to publications in English and published from 2000 to present. Observational and experimental (qualitative or quantitative) studies were included if participants were young adults (median/mean ages 18-26) with IDD (Autism, cerebral palsy, Down syndrome, spina bifida, or other IDD-related conditions) and study outcomes addressed one of the Quadruple Aim domains (population health, patient/family experience, cost/utilization, and healthcare provider/caregiver experience). Studies were excluded if participants had attention deficit/hyperactivity disorder or learning disability only, if outcomes were primarily educational or vocational, or if publications were reviews, abstracts, or not in English.

Results: One hundred and three articles were included data extraction. Articles were categorized under the Quadruple Aim domains: Population Health (43), Patient/Caregiver Healthcare Experience included (23), Cost/Utilization (24), and Healthcare Provider/Caregiver Experience (15). Most articles were observational and utilized a variety of assessments or internally developed questions as measures.

Conclusions: While studies describing HCT outcomes for the IDD population are limited and measures are inconsistent, studies pertaining to Quadruple Aim outcomes identified in this review can further direct efforts towards consensus and standardization of HCT outcome measures to address the needs of individuals with IDD, their families, and caregivers/providers.

Keywords: Autism; Cerebral palsy; Developmental disability; Health care transition; Intellectual disability; Spina bifida.

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.

Figures

Fig. 1
Fig. 1
Quadruple Aim Domains and Sub-Domains for Healthcare Transition.
Fig. 2
Fig. 2
PRISMA-ScR flow diagram. *Two articles were considered applicable to both Population Health and Cost/Utilization.
Fig. 3
Fig. 3
Quadruple Aim HCT Measurement Recommendations for Young Adults with IDD.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Lauer E., McCallion P. Mortality of people with intellectual and developmental disabilities from select US state disability service systems and medical claims data. J Appl Res Intellect Disabil. 2015;28(5):394–405. oi:10.1111/jar.12191. - PubMed
    1. Wehmeyer M.L., Brown I., Percy M., Shogren K., Fung W.L.A., editors. Intellectual and Developmental Disabilities. 2nd ed.., Brookes; Baltimore, MD: 2017.
    1. Lauer E., McCallion P. Mortality of people with intellectual and developmental disabilities from select US state disability service systems and medical claims data. J Appl Res Intellect Disabil. 2015;28(5):394–405. doi: 10.1111/jar.12191. - DOI - PubMed
    1. Reichard A., Haile E., Morris A. Characteristics of medicare beneficiaries with intellectual or developmental disabilities. Intellect Dev Disabil. 2019;57(5):405–420. doi: 10.1352/1934-9556-57.5.405. - DOI - PubMed
    1. Oakes L.R., Milroy J.J., Hickerson B.D. Health disparities and health promotion needs of college students with intellectual and/or developmental disabilities: A systematic literature review. J Am Coll Health. 2020;68(7):742–753. doi: 10.1080/07448481.2019.1615495. - DOI - PubMed

Publication types

LinkOut - more resources