Adaptive behavior of adults with Down syndrome and their health-related quality of life
- 1 Downloads
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.
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).
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.
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.
KeywordsAdults with Down syndrome Adaptive behavior Health-related quality of life
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.
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.
Compliance with Ethical Standards
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.
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.
Conflict of Interest
The authors declare that there is no conflict of interest.
- Bosch, J. J. (2003). Health maintenance throughout the life span for individuals with Down syndrome. Journal of the American Academy of Nurse Practitioners, 15, 5–17. https://doi.org/10.1111/j.1745-7599.2003.tb00248.x.CrossRefPubMedGoogle Scholar
- Community-University Partnership for the Study of Children, Youth, and Families. (2011). Review of the vineland adaptive behavior scales-second edition (Vineland-II). Alberta, Canada: Edmonton.Google Scholar
- Graves, R. J., Graff, J. C., Esbensen, A. J., Hathaway, D. K., Wan, J. Y., & Wicks, M. N. (2016). Measuring health-related quality of life of adults with Down syndrome. American Journal of Intellectual and Developmental Disabilities, 121(4), 312–326. https://doi.org/10.1352/1944-7558-121.4.312.CrossRefGoogle Scholar
- Ghezzo, A., Salvioli, S., Solimando, M. C., Palmieri, A., Chiostergi, C., Scurti, M., et al. (2014). Age-related changes of adaptive and neuropsychological features in persons with Down syndrome. PLoS One, 9(11), e113111. https://doi.org/10.1371/journal.pone.0113111.CrossRefPubMedPubMedCentralGoogle Scholar
- Jones, K. L., Jones, M. C., & Campo, M. D. (2013). Smith’s recognizable patterns of human malformation (7th ed.). Philadelphia: W.B. Saunders Company.Google Scholar
- Mai, C. T., Kucik, J. E., Isenburg, J., Feldkamp, M. L., Marengo, L. K., Bugenske, E. M., et al. (2013). Selected birth defects data from population-based birth defects surveillance programs in the United States, 2006-2010: featuring trisomy conditions. Birth Defects Research. Part A, Clinical and Molecular Teratology, 97(11), 709–725. https://doi.org/10.1002/bdra.23198.CrossRefGoogle Scholar
- McGuire, D., & Chicoine, B. (2006). Mental wellness in adults with Down syndrome: a guide to emotional and behavioral strengths and challenges. Bethesda, MD: Woodbine House, Inc..Google Scholar
- Pearson Assessments. (2007). Vineland-II ASSIST Scoring and Reporting System (Version 1.1) [Computer software]. Minneapolis, MN: NCS Pearson.Google Scholar
- Polit, D. F., & Beck, C. T. (2008). Nursing research: generating and assessing evidence for nursing practice (8th ed.). Philadelphia, PA: Lippincott Williams & Wilkins.Google Scholar
- Saris-Baglama, R. N., Dewey, C. J., Chisholm, G. B., Plumb, E., King, J., Rasicot, P., et al. (2011). QualityMetric Health Outcomes TM Scoring Software 4.5 User’s Guide. Lincoln, R.I.: QualityMetric Inc..Google Scholar
- Schalock, R. L., Borthwick-Duffy, S. A., Bradley, V. J., Buntinx, W. H. E., Coulter, D. L., Craig, E. M., et al. (2010). Intellectual disability: definition, classification, and systems of supports: the AAIDD Ad Hoc Committee on Terminology and Classification (11th ed.). Washington, DC: American Association on Intellectual and Developmental Disabilities.Google Scholar
- Skotko, B. G., & Tennebaum, A. (2016). Down syndrome. In I. L. Rubin, J. Merrick, D. E. Greydanus, & D. R. Patel (Eds.), Health care for people with intellectual and developmental disabilities across the lifespan (3 rded., pp. 739-750). Springer International Publishing Switzerland. https://doi.org/10.1007/978-3-319-18096-0_30.CrossRefGoogle Scholar
- Sparrow, S. S., Cicchetti, D. V., & Balla, D. A. (2005). Vineland adaptive behavior scales: second edition: survey forms manual. Minneapolis, MN: NCS Pearson, Inc..Google Scholar
- van Weeghel, J., van Zelst, C., Boertien, D., & Hasson-Ohayon, I. (2019). Conceptualizations, assessments, and implications of personal recovery in mental illness: a scoping review of systematic reviews and meta-analyses. Psychiatric Rehabilitation Journal, 42(2), 169–181. https://doi.org/10.1037/prj0000356.CrossRefPubMedGoogle Scholar
- U.S. Department of Education. (n.d.). Statue and regulations: IDEA: Individuals with Disabilities Education Act. Retrieved from https://sites.ed.gov/idea/statuteregulations/
- Ware Jr., J. E., Kosinski, M., Turner-Bowker, D. M., Sundaram, M., Gandek, B., & Maruish, M. E. (2007). User’s manual for the SF-12v2 Health Survey (2nd ed.). Lincoln, RI: Quality-Metric, Inc..Google Scholar
- Witts, P., & Elders, S. (1998). The ‘severe impairment battery’: assessing cognitive ability in adults with Down syndrome. British Journal of Clinical Psychology, 37, 213-216.Google Scholar