Examination of Health Care Transition, Health Status, and Functional Outcomes Among Adolescents and Young Adults with Intellectual Disability

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Adolescence is a period marked by tremendous social, emotional and physical changes; however, adolescents and young adults (AYAs) with intellectual disability (ID), who must navigate this period with limitations in intellectual and adaptive functioning, face additional difficulties. Much remains unknown about their health care transition (HCT) experiences and their health and well-being as they transition into adulthood; therefore, this study examined the HCT, health status, and functional outcomes of AYAs with ID.

This study incorporated both an individual and population approach to understand needs of AYAs with ID. First, within Chapter 1, a qualitative descriptive design study with semi-structured individual interviews with 16 parent participants was used. We utilized purposive sampling of parents with variation on race/ethnicity and AYA age, stage in transition, and condition; and we utilized content analysis. In Chapter 2, we developed a new method for identifying individuals with ID within large, population-level studies not targeted on ID. We used a secondary analysis of the de-identified, restricted-use National Longitudinal Study of Adolescent to Adult Health (Add Health) database representing 20,745 adolescents to develop a method for identifying individuals who meet criteria of ID. The Add Health ID Indicator was developed from the variables indicative of intellectual and adaptive functioning limitations available within the Add Health database. Through this method, we identified 441 AYAs with ID. Lastly, in Chapter, a descriptive, correlative study utilized the Add Health database and Add Health Indicator to examine the health status and functional outcomes among 254 AYAs with ID.

Our study illuminates the need for (a) improved infrastructure to provide effective HCT and (b) partnerships to help integrate HCT support within other life course systems. Our results support the rationale for a noncategorical HCT-focused approach as well as a parent-peer, coach-facilitated intervention for bridging the gap between systems and meeting family needs. By examining the Add Health ID sample, we identified a decline in health status from adolescence to adulthood among the AYAs with ID, demonstrating that their transition to adulthood is a period during which prevention of obesity and interventions to improve health status should be targeted. The disability-, adolescent-, and family-related factors associated with health status and functional outcomes among AYAs with ID can inform further research, tailoring of interventions, and policies. Researchers can utilize the data-driven method we developed with commonly available data elements in nationally representative datasets to leverage existing rich data sets in order to identify individuals with ID. These data sets, including Add Health, hold significant potential for answering research questions, guiding policy, and informing interventions to improve the health of the ID population.






Franklin, Michelle Scotton (2020). Examination of Health Care Transition, Health Status, and Functional Outcomes Among Adolescents and Young Adults with Intellectual Disability. Dissertation, Duke University. Retrieved from https://hdl.handle.net/10161/20884.


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