Abstract
The goal of this study was to examine caregiver agreement to hear about local research opportunities by joining a clinical research registry. Data from this cross-sectional study were gathered, between 2014 and 2017, across two outpatient clinics: (1) a multidisciplinary Autism Spectrum Disorder (ASD) clinic (N = 5228) and (2) a general psychology clinic serving youth with, or at risk for, a neurodevelopmental disorder (NDD; N = 5040). Overall, more than 8 in 10 caregivers agreed to join the registry. Several child clinical characteristics, as well as racial and sociodemographic factors, were predictive of parental agreement. Findings suggest caregivers of youth with ASD and NDD are amenable to joining the local research enterprise, however further work is needed to understand why some caregivers decline.
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Change history
29 August 2019
During the publication process, an author “M. Pinkett-Davis”, who helped conceptualize and revise this study was accidentally excluded from the authorship list. The revised author group is now: Kalb, L., Jacobson, L., Zisman, C., Mahone, E., Landa, R., Azad, G., Pinkett-Davis, M., Menon, D., Singh, V., Zabel, A., & Pritchard, A. Please use this authorship list when citing this manuscript.
References
Achenbach, T. M., & Edelbrock, C. S. (1983). Manual for the child behavior checklist: and revised child behavior profile. Burlington: University of Vermont, Department of Psychiatry.
Adams, D., Handley, L., Heald, M., Simkiss, D., Jones, A., Walls, E., et al. (2017). A comparison of two methods for recruiting children with an intellectual disability. Journal of Applied Research in Intellectual Disabilities, 30(4), 695–708.
Bajo, J., Wiggins, L., & Christensen, D. L. (2018). Prevalence of Autism Spectrum Disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network. Epidemiology Program Office, Centers for Disease Control and Prevention, U.S. Dept. of Health and Human Services. https://doi.org/10.15585/mmwr.ss6706a1
Baquet, C. R., Commiskey, P., Daniel Mullins, C., & Mishra, S. I. (2006). Recruitment and participation in clinical trials: Socio-demographic, rural/urban, and health care access predictors. Cancer Detection and Prevention, 30(1), 24–33. https://doi.org/10.1016/j.cdp.2005.12.001.
Baquet, C. R., Henderson, K., Commiskey, P., & Morrow, J. N. (2008). Clinical trials: The art of enrollment. Cancer Care in Vulnerable Populations, 24(4), 262–269. https://doi.org/10.1016/j.soncn.2008.08.006.
Bonevski, B., Randell, M., Paul, C., Chapman, K., Twyman, L., Bryant, J., … Hughes, C. (2014). Reaching the hard-to-reach: A systematic review of strategies for improving health and medical research with socially disadvantaged groups. BMC Medical Research Methodology, 14(1), 42. https://doi.org/10.1186/1471-2288-14-42
Boyle, C. A., Boulet, S., Schieve, L. A., Cohen, R. A., Blumberg, S. J., Yeargin-Allsopp, M., … Kogan, M. D. (2011). Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics, 127(6), 1034–1042. https://doi.org/10.1542/peds.2010-2989
Buckley, B., Murphy, A. W., Byrne, M., & Glynn, L. (2007). Selection bias resulting from the requirement for prior consent in observational research: a community cohort of people with ischaemic heart disease. Heart, 93(9), 1116. https://doi.org/10.1136/hrt.2006.111591.
Cleaver, S., Ouellette-Kuntz, H., & Sakar, A. (2010). Participation in intellectual disability research: A review of 20 years of studies. Journal of Intellectual Disability Research, 54(3), 187–193.
Damery, S., Gratus, C., Grieve, R., Warmington, S., Jones, J., Routledge, P., … Wilson, S. (2011). The use of herbal medicines by people with cancer: A cross-sectional survey. British Journal Of Cancer, 104, 927.
Danckaerts, M., Sonuga-Barke, E. J. S., Banaschewski, T., Buitelaar, J., Döpfner, M., Hollis, C., … Coghill, D. (2010). The quality of life of children with attention deficit/hyperactivity disorder: A systematic review. European Child & Adolescent Psychiatry, 19(2), 83–105. https://doi.org/10.1007/s00787-009-0046-3
Dang, J., Rodriguez, E., Luque, J. S., Erwin, D. O., Meade, C. D., & Chen, M. S., Jr. (2014). Engaging diverse populations about biospecimen donation for cancer research. Journal of Community Genetics, 5(4), 313–327. https://doi.org/10.1007/s12687-014-0186-0.
Dash, C., Wallington, S. F., Muthra, S., Dodson, E., Mandelblatt, J., & Adams-Campbell, L. L. (2014). Disparities in knowledge and willingness to donate research biospecimens: A mixed-methods study in an underserved urban community. Journal of Community Genetics, 5(4), 329–336. https://doi.org/10.1007/s12687-014-0187-z.
Dunn, K. M., Jordan, K., Lacey, R. J., Shapley, M., & Jinks, C. (2004). Patterns of consent in epidemiologic research: Evidence from over 25,000 responders. American Journal of Epidemiology, 159(11), 1087–1094. https://doi.org/10.1093/aje/kwh141.
Elliott, C. D. (2007). Differential ability scales (2nd ed.). San Antonio: Harcourt Assessment Inc.
Fairthorne, J., Hammond, G., Bourke, J., Jacoby, P., & Leonard, H. (2014). Early mortality and primary causes of death in mothers of children with intellectual disability or Autism Spectrum Disorder: A retrospective cohort study. PLoS ONE. https://doi.org/10.1371/journal.pone.0113430.
Giuliano, A. R., Mokuau, N., Hughes, C., Tortolero-Luna, G., Risendal, B., Ho, R. C. S., … Mccaskill-Stevens, W. J. (2000). Participation of minorities in cancer research: The influence of structural, cultural, and linguistic factors. Annals of Epidemiology, 10(8, Supplement 1), S22–S34. https://doi.org/10.1016/S1047-2797(00)00195-2
Gotham, K., Pickles, A., & Lord, C. (2009). Standardizing ADOS scores for a measure of severity in autism spectrum disorders. Journal of Autism and Developmental Disorders, 39(5), 693–705.
Groenwold, R. H. H., White, I. R., Donders, A. R. T., Carpenter, J. R., Altman, D. G., & Moons, K. G. M. (2012). Missing covariate data in clinical research: When and when not to use the missing-indicator method for analysis. Canadian Medical Association Journal, 184(11), 1265. https://doi.org/10.1503/cmaj.110977.
Herring, S., Gray, K., Taffe, J., Tonge, B., Sweeney, D., & Einfeld, S. (2006). Behaviour and emotional problems in toddlers with pervasive developmental disorders and developmental delay: Associations with parental mental health and family functioning. Journal of Intellectual Disability Research, 50(12), 874–882. https://doi.org/10.1111/j.1365-2788.2006.00904.x.
Kalb, L. G., Cohen, C., Lehmann, H., & Law, P. (2012a). Survey non-response in an internet-mediated, longitudinal autism research study. Journal of the American Medical Informatics Association, 19(4), 668–673. https://doi.org/10.1136/amiajnl-2012-000863.
Kalb, L. G., Freedman, B., Foster, C., Menon, D., Landa, R., & Law, P. (2012b). Determinants of appointment absenteeism at an outpatient pediatric autism clinic. Journal of Developmental and Behavioral Pediatrics, 33(9), 685–697.
Lennox, N., Taylor, M., Rey-Conde, T., Bain, C., Purdie, D. M., & Boyle, F. (2005). Beating the barriers: Recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research, 49(4), 296–305.
Little, R. J., & Vartivarian, S. (2003). On weighting the rates in non-response weights. Statistics in Medicine, 22(9), 1589–1599. https://doi.org/10.1002/sim.1513.
Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. (2012). Autism diagnostic observation schedule (2nd ed.). Torrance, CA: Western Psychological Services.
Lord, C., Wagner, A., Rogers, S., Szatmari, P., Aman, M., Charman, T., … Guthrie, D. (2005). Challenges in evaluating psychosocial interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders, 35(6), 695–708.
Mahone, E. M., Slomine, B. S., & Zabel, T. A. (2018). Genetic and neurodevelopmental disorders. In J. E. Morgan & J. H. Ricker (Eds.), Textbook of clinical neuropsychology, 2nd (pp. 127–140). New York: Psychology Press.
Mash, E. J., & Barkley, R. A. (2006). Treatment of childhood disorders (3rd ed.). New York: The Guilford Press.
Oliver-Africano, P., Dickens, S., Ahmed, Z., Bouras, N., Cooray, S., Deb, S., … Tyrer, P. (2010). Overcoming the barriers experienced in conducting a medication trial in adults with aggressive challenging behaviour and intellectual disabilities. Journal of Intellectual Disability Research, 54(1), 17–25. https://doi.org/10.1111/j.1365-2788.2009.01195.x
Reynolds, C., & Kamphaus, R. (2004). Behavior assessment system for children, (BASC-2) handout (Vol. 4201, p. 55014-1796). Circle Pines: AGS Publishing.
Rollins, L., Sy, A., Crowell, N., Rivers, D., Miller, A., Cooper, P., … Ofili, E. (2018). Learning and action in community health: Using the health belief model to assess and educate African American Community residents about participation in clinical research. International Journal of Environmental Research and Public Health, 15(9), 1862. https://doi.org/10.3390/ijerph15091862
SPARK: Simons Foundation Powering Autism Research for Knowledge. (2018). SPARK: Igniting Autism Research, Igniting Lives [Simmons Foundation].
Tait, A. R., Voepel-Lewis, T., & Malviya, S. (2003). Participation of children in clinical research factors that influence a parent’s decision to consent. The Journal of the American Society of Anesthesiologist, 99(4), 819–825.
Theule, J., Wiener, J., Tannock, R., & Jenkins, J. M. (2010). Parenting stress in families of children with ADHD: A meta-analysis. Journal of Emotional and Behavioral Disorders, 21(1), 3–17. https://doi.org/10.1177/1063426610387433.
Treschan, T. A., Scheck, T., Kober, A., Fleischmann, E., Birkenberg, B., Petschnigg, B., … Sessler, D. I. (2003). The influence of protocol pain and risk on patients’ Willingness to consent for clinical studies: A randomized trial. Anesthesia & Analgesia, 96(2). Retrieved from https://journals.lww.com/anesthesia-analgesia/Fulltext/2003/02000/The_Influence_of_Protocol_Pain_and_Risk_on.37.aspx
Wechsler, D. (2012). Wechsler preschool and primary scale of intelligence (4th ed.). San Antonio, TX: The Psychological Corporation.
Wechsler, D. (2014). WISC-V: Administration and scoring manual. Bloomington: NCS Pearson, Incorporated.
Acknowledgments
The authors would like to acknowledge Kennedy Krieger Institute’s Intellectual and Developmental Disabilities Research Center (U54 HD079123) for supporting this work.
Funding
This study was funded by the Intellectual Developmental Disabilities Research Center (U54 HD079123).
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LK was responsible for conducting the analyses. LK, LJ, GA, DM, VS, and AZ assisted with data acquisition. LK and AP were responsible for developing the initial study questions. All authors contributed to the study design, writing, and interpretation.
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No conflicts exists. Author D has provided consultation to Takeda Pharmaceuticals, however those services had no bearing, influence, or relevance to the current study.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.
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For this type of study, a retrospective chart review, formal consent is not required. As such, the authors received a waiver of consent from the governing IRB.
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Kalb, L., Jacobson, L., Zisman, C. et al. Interest in Research Participation Among Caregivers of Children with Neurodevelopmental Disorders. J Autism Dev Disord 49, 3786–3797 (2019). https://doi.org/10.1007/s10803-019-04088-9
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DOI: https://doi.org/10.1007/s10803-019-04088-9