Abstract
Objectives
Adaptive behavior, the ability to function in one’s environment, is compromised in individuals with Down syndrome (DS). Problems with adaptive behaviors may impact the individual’s physical and mental health-related quality of life (HRQOL). This study aims to describe the adaptive behavior of adults with DS and examine the role adaptive behavior has on their HRQOL.
Methods
Sixty dyads of adults with DS and their caregivers completed the Vineland Adaptive Behavior Scales, Second Edition (Vineland-II) and QualityMetric 12-Item Short Form Health Survey, version 2 (SF-12v2).
Results
All mean adaptive behavior levels were in the low range except coping and receptive communication, which were within the moderately low range. A significant negative correlation existed between age of the adult with DS and overall adaptive functioning, daily living skills, and socialization. Pairwise comparison revealed significant differences across Vineland-II domains, with ratings of socialization higher than daily living skills and communication, and daily living skills higher than communication. Only mental HRQOL was positively correlated with daily living skills, socialization, and overall adaptive functioning. Two parallel regression models were created, resulting in written communication (negative) and interpersonal relationships (positive) being the only significant predictors of mental HRQOL.
Conclusions
Caregiver-reported adaptive behavior of adults with DS was in the low to moderately low ranges. By exploring associations between adaptive behavior and HRQOL, adults with DS, their caregivers, their providers (including healthcare, education, and service providers), and researchers can develop and target interventions to improve the adaptive behavior and, thus, the HRQOL of adults with DS.
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Funding
Funding for the original study was awarded by Sigma Theta Tau International Honor Society of Nursing, Beta Theta-at-large chapter, and by the Down Syndrome Society of Mobile County in Mobile, AL.
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RJG designed and executed the original study, assisted in the design of the secondary analysis, and wrote the majority of this paper. KZ analyzed the secondary analysis, wrote the results section of the paper, and assisted in the design of the secondary analysis and writing of this paper. JCG assisted in the design and execution of the original study, reviewed the literature for the secondary analysis, and contributed to the writing of this paper. HRH researched and identified the conceptual model for the secondary analysis, wrote the component on the conceptual model for this paper, and collaborated in the writing and editing of this paper.
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Ethics Statement
This manuscript has not been submitted for consideration in any other journal and the material has not been published. Protection of human subjects was diligently acknowledged, and the study was approved by The University of Tennessee Health Science Center Institutional Review Board.
Informed Consent
As outlined in the study, every research visit began with a detailed explanation of the study to the participating dyad, questions were answered, and informed consent and/or assent were obtained from the adult with DS. Informed consent was obtained from each caregiver.
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The authors declare that there is no conflict of interest.
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Graves, R.J., Zlomke, K., Graff, J.C. et al. Adaptive behavior of adults with Down syndrome and their health-related quality of life. Adv Neurodev Disord 4, 27–35 (2020). https://doi.org/10.1007/s41252-019-00133-x
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DOI: https://doi.org/10.1007/s41252-019-00133-x