Examining a stepped-care telehealth program for parents of young children with autism: a proof-of-concept trial

Allison L Wainer, Zachary E Arnold, Caroline Leonczyk, Latha Valluripalli Soorya, Allison L Wainer, Zachary E Arnold, Caroline Leonczyk, Latha Valluripalli Soorya

Abstract

Background: Intervention during the first years of life for children with autism spectrum disorder (ASD) may have the strongest impact on long-term brain development and functioning. Yet, barriers such as a shortage of trained professionals contribute to significant delays in service. The goal of this proof-of-concept study was to explore strategies that support timely and equitable deployment of ASD-specific interventions.

Methods: This 15-week, randomized proof-of-concept study explored the acceptability of a digital parent mediated intervention online reciprocal imitation training (RIT; a naturalistic developmental behavioral intervention) and compared it to a treatment as usual (TAU) control on parent and child outcomes. Eligible children were between 18 and 60 months, met the cutoff for ASD on the Autism Diagnostic Observation Schedule-2nd Edition and demonstrate significant social imitation deficits. Primary outcomes include the acceptability of RIT (Scale of Treatment Perceptions) and the feasibility of the Online RIT digital intervention (online RIT attributes). Secondary outcomes included parent fidelity (RIT parent fidelity form) and parental self-efficacy (Early Intervention Parenting Self-Efficacy Scale). Exploratory outcome measures included child social communication (Social Communication Checklist), child imitation skills (Unstructured Imitation Assessment), and family quality of life (Beach Center Family Quality of Life Scale).

Results: Twenty participants were randomized in a 1:1 fashion. The acceptability and feasibility of RIT and the Online RIT digital intervention were rated highly. Among the secondary outcomes, there were significant group differences in parent fidelity (p < .001) and self-efficacy (p = .029). On exploratory outcomes, there were group differences in child social communication (p = .048). There were no significant group differences in imitation ability (p = .05) or family quality of life (p = .22).

Limitations: There are several limitations with this study, including the small sample size as well as lack of data on enactment and website engagement. This study was not able to address questions related to which variables predict program engagement and treatment response, which will be critical for determining which families may benefit from such a stepped-care delivery model.

Conclusions: Overall, the Online RIT program delivered in a stepped-care format shows strong acceptability and holds promise as an innovative delivery model. Trial registration ClinicalTrials.gov, NCT04467073. Registered 10 July 2020- Retrospectively registered, https://ichgcp.net/clinical-trials-registry/NCT04467073.

Keywords: Autism spectrum disorder; Digital intervention; Online RIT; Reciprocal imitation training; Stepped-care; Telehealth.

Conflict of interest statement

AW serves as a consultant and trainer in RIT for community-based organizations. CL, ZA, and LS declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
CONSORT diagram
Fig. 2
Fig. 2
Stepped-care procedures

References

    1. Zwaigenbaum L, Bauman ML, Choueiri R, Kasari C, Carter A, Granpeesheh D, et al. Early intervention for children with autism spectrum disorder under 3 years of age: recommendations for practice and research. Pediatrics. 2015;136(Supplement 1):S60–S81. doi: 10.1542/peds.2014-3667E.
    1. Webb SJ, Jones EJ, Kelly J, Dawson G. The motivation for very early intervention for infants at high risk for autism spectrum disorders. Int J Speech-Lang Pathol. 2014;16(1):36–42. doi: 10.3109/17549507.2013.861018.
    1. Karpur A, Lello A, Frazier T, Dixon PJ, Shih AJ. Health disparities among children with autism spectrum disorders: analysis of the National Survey of Children’s Health 2016. J Autism Dev Disord. 2019;49(4):1652–1664. doi: 10.1007/s10803-018-3862-9.
    1. Elder JH, Brasher S, Alexander B. Identifying the barriers to early diagnosis and treatment in underserved individuals with autism spectrum disorders (ASD) and their families: a qualitative study. Issues Mental Health Nurs. 2016;37(6):412–420. doi: 10.3109/01612840.2016.1153174.
    1. Committee IAC. 2017 Interagency Autism Coordinating Committee strategic plan for autism spectrum disorder. Retrieved from the US Department of Health and Human Services Interagency Autism Coordinating Committee website 2017. Retrieved from .
    1. Schreibman L, Dawson G, Stahmer AC, Landa R, Rogers SJ, McGee GG, et al. Naturalistic developmental behavioral interventions: empirically validated treatments for autism spectrum disorder. J Autism Dev Disord. 2015;45(8):2411–2428. doi: 10.1007/s10803-015-2407-8.
    1. Council NR. Educating children with autism. Washington: National Academies Press; 2001.
    1. Vismara LA, Rogers SJ. Behavioral treatments in autism spectrum disorder: what do we know? Annu Rev Clin Psychol. 2010;6:447–468. doi: 10.1146/annurev.clinpsy.121208.131151.
    1. Odom SL, Boyd BA, Hall LJ, Hume K. Evaluation of comprehensive treatment models for individuals with autism spectrum disorders. J Autism Dev Disord. 2010;40(4):425–436. doi: 10.1007/s10803-009-0825-1.
    1. Dingfelder HE, Mandell DS. Bridging the research-to-practice gap in autism intervention: an application of diffusion of innovation theory. J Autism Dev Disord. 2011;41(5):597–609. doi: 10.1007/s10803-010-1081-0.
    1. Yingling ME, Bell BA. Underutilization of early intensive behavioral intervention among 3-year-old children with autism spectrum disorder. J Autism Dev Disord. 2019;49(7):2956–2964. doi: 10.1007/s10803-019-04005-0.
    1. Yingling ME, Hock RM, Bell BA. Time-lag between diagnosis of autism spectrum disorder and onset of publicly-funded early intensive behavioral intervention: do race–ethnicity and neighborhood matter? J Autism Dev Disord. 2018;48(2):561–571. doi: 10.1007/s10803-017-3354-3.
    1. Ingersoll B. Brief report: Pilot randomized controlled trial of reciprocal imitation training for teaching elicited and spontaneous imitation to children with autism. J Autism Dev Disord. 2010;40(9):1154–1160. doi: 10.1007/s10803-010-0966-2.
    1. Ingersoll B. Brief report: Effect of a focused imitation intervention on social functioning in children with autism. J Autism Dev Disord. 2012;42(8):1768–1773. doi: 10.1007/s10803-011-1423-6.
    1. Ingersoll B, Gergans S. The effect of a parent-implemented imitation intervention on spontaneous imitation skills in young children with autism. Res Dev Disabil. 2007;28(2):163–175. doi: 10.1016/j.ridd.2006.02.004.
    1. Kasari C, Gulsrud A, Paparella T, Hellemann G, Berry K. Randomized comparative efficacy study of parent-mediated interventions for toddlers with autism. J Consult Clin Psychol. 2015;83(3):554. doi: 10.1037/a0039080.
    1. Internet/broadband fact sheet. Pew Research Center Internet and Technology; 2019.
    1. Fact Sheet: Telehealth [press release]. American Hospital Association; 2017.
    1. Cason J, Behl D, Ringwalt S. Overview of states’ use of telehealth for the delivery of early intervention (IDEA Part C) services. Int J Telerehabil. 2012;4(2):39.
    1. Cole B, Stredler-Brown A, Cohill B, Blaiser K, Behl D, Ringwalt S. The development of statewide policies and procedures to implement telehealth for Part C service delivery. Int J Telerehabil. 2016;8(2):77. doi: 10.5195/ijt.2016.6206.
    1. Shigekawa E, Fix M, Corbett G, Roby DH, Coffman J. The current state of telehealth evidence: a rapid review. Health Aff. 2018;37(12):1975–1982. doi: 10.1377/hlthaff.2018.05132.
    1. Dent L, Peters A, Kerr PL, Mochari-Greenberger H, Pande RL. Using telehealth to implement cognitive-behavioral therapy. Psychiatr Serv. 2018;69(4):370–373. doi: 10.1176/appi.ps.201700477.
    1. Stiles-Shields C, Montague E, Lattie EG, Schueller SM, Kwasny MJ, Mohr DC. Exploring user learnability and learning performance in an app for depression: usability study. JMIR Hum Factors. 2017;4(3):e18. doi: 10.2196/humanfactors.7951.
    1. Nefdt N, Koegel R, Singer G, Gerber M. The use of a self-directed learning program to provide introductory training in pivotal response treatment to parents of children with autism. J Posit Behav Interv. 2010;12(1):23–32. doi: 10.1177/1098300709334796.
    1. Wainer AL, Ingersoll BR. Disseminating ASD interventions: a pilot study of a distance learning program for parents and professionals. J Autism Dev Disord. 2013;43(1):11–24. doi: 10.1007/s10803-012-1538-4.
    1. Ingersoll B, Berger NI. Parent engagement with a telehealth-based parent-mediated intervention program for children with autism spectrum disorders: predictors of program use and parent outcomes. J Med Internet Res. 2015;17(10):e227. doi: 10.2196/jmir.4913.
    1. Wainer AL, Ingersoll BR. Increasing access to an ASD imitation intervention via a telehealth parent training program. J Autism Dev Disord. 2015;45(12):3877–3890. doi: 10.1007/s10803-014-2186-7.
    1. Bearss K, Burrell TL, Challa SA, Postorino V, Gillespie SE, Crooks C, et al. Feasibility of parent training via telehealth for children with autism spectrum disorder and disruptive behavior: a demonstration pilot. J Autism Dev Disord. 2018;48(4):1020–1030. doi: 10.1007/s10803-017-3363-2.
    1. Lindgren S, Wacker D, Suess A, Schieltz K, Pelzel K, Kopelman T, et al. Telehealth and autism: treating challenging behavior at lower cost. Pediatrics. 2016;137(Supplement 2):S167–S175. doi: 10.1542/peds.2015-2851O.
    1. Simacek J, Dimian AF, McComas JJ. Communication intervention for young children with severe neurodevelopmental disabilities via telehealth. J Autism Dev Disord. 2017;47(3):744–767. doi: 10.1007/s10803-016-3006-z.
    1. Wacker DP, Lee JF, Dalmau YCP, Kopelman TG, Lindgren SD, Kuhle J, et al. Conducting functional communication training via telehealth to reduce the problem behavior of young children with autism. J Dev Phys Disabil. 2013;25(1):35–48. doi: 10.1007/s10882-012-9314-0.
    1. Vismara LA, McCormick CE, Wagner AL, Monlux K, Nadhan A, Young GS. Telehealth parent training in the Early Start Denver Model: results from a randomized controlled study. Focus Autism Other Dev Disabil. 2018;33(2):67–79. doi: 10.1177/1088357616651064.
    1. Collins LM, Murphy SA, Strecher V. The multiphase optimization strategy (MOST) and the sequential multiple assignment randomized trial (SMART): new methods for more potent eHealth interventions. Am J Prev Med. 2007;32(5):S112–S118. doi: 10.1016/j.amepre.2007.01.022.
    1. Almirall D, Kasari C, McCaffrey DF, Nahum-Shani I. Developing optimized adaptive interventions in education. J Res Educ Effect. 2018;11(1):27–34.
    1. Wainer A, Ingersoll B. Intervention fidelity: an essential component for understanding ASD parent training research and practice. Clin Psychol Sci Pract. 2013;20(3):335–357. doi: 10.1111/cpsp.12045.
    1. Schertz HH, Lester JN, Erden E, Safran S, Githens P. Challenges and contributors to self-efficacy for caregivers of toddlers with autism. Autism. 2020;24(5):1260–1272. doi: 10.1177/1362361319899761.
    1. O’Donohue WT, Draper C. The case for evidence-based stepped care as part of a reformed delivery system. In: Draper C, O’Donohue WT, editors. Stepped care and e-health. New York: Springer; 2011. pp. 1–16.
    1. Ingersoll B, Lewis E, Kroman E. Teaching the imitation and spontaneous use of descriptive gestures in young children with autism using a naturalistic behavioral intervention. J Autism Dev Disord. 2007;37(8):1446–1456. doi: 10.1007/s10803-006-0221-z.
    1. Ingersoll B, Schreibman L. Teaching reciprocal imitation skills to young children with autism using a naturalistic behavioral approach: effects on language, pretend play, and joint attention. J Autism Dev Disord. 2006;36(4):487. doi: 10.1007/s10803-006-0089-y.
    1. Cardon TA, Wilcox MJ. Promoting imitation in young children with autism: a comparison of reciprocal imitation training and video modeling. J Autism Dev Disord. 2011;41(5):654–666. doi: 10.1007/s10803-010-1086-8.
    1. Penney A, Schwartz I. Effects of coaching on the fidelity of parent implementation of reciprocal imitation training. Autism. 2019;23(6):1497–1507. doi: 10.1177/1362361318816688.
    1. Zaghlawan HY, Ostrosky MM. A parent-implemented intervention to improve imitation skills by children with autism: a pilot study. Early Child Educ J. 2016;44(6):671–680. doi: 10.1007/s10643-015-0753-y.
    1. Bucci S, Barrowclough C, Ainsworth J, Machin M, Morris R, Berry K, et al. Actissist: proof-of-concept trial of a theory-driven digital intervention for psychosis. Schizophr Bull. 2018;44(5):1070–1080. doi: 10.1093/schbul/sby032.
    1. Arora S, Peters AL, Agy C, Menchine M. A mobile health intervention for inner city patients with poorly controlled diabetes: proof-of-concept of the TExT-MED program. Diabetes Technol Therap. 2012;14(6):492–496. doi: 10.1089/dia.2011.0252.
    1. Di Simplicio M, Appiah-Kusi E, Wilkinson P, Watson P, Meiser-Stedman C, Kavanagh DJ, et al. Imaginator: a proof-of-concept feasibility trial of a brief imagery-based psychological intervention for young people who self-harm. Suicide Life-Threat Beh. 2020;50(3):724–740. doi: 10.1111/sltb.12620.
    1. Lord C, Rutter M, DiLavore P, Risi S, Gotham K, Bishop S. Autism diagnostic observation schedule, 3nd edn (ADOS-2) manual (part 1): modules 1–4. 2012.
    1. Mullen E. Mullen scales of early learning. AGS. Circle Pines: American Guidance Services. Inc; 1995.
    1. Swineford LB, Guthrie W, Thurm A. Convergent and divergent validity of the Mullen Scales of Early Learning in young children with and without autism spectrum disorder. Psychol Assess. 2015;27(4):1364. doi: 10.1037/pas0000116.
    1. Bunz U. A generational comparison of gender, computer anxiety, and computer-email-web fluency. Stud Media Inf Lit Educ. 2009;9(2):54–69.
    1. Bunz U. The computer-email-web (CEW) fluency scale-development and validation. Int J Hum Comput Interact. 2004;17(4):479–506. doi: 10.1207/s15327590ijhc1704_3.
    1. Berger NI, Manston L, Ingersoll B. Establishing a scale for assessing the social validity of skill building interventions for young children with autism spectrum disorder. J Autism Dev Disord. 2016;46(10):3258–3269. doi: 10.1007/s10803-016-2863-9.
    1. Moore GC, Benbasat I. Development of an instrument to measure the perceptions of adopting an information technology innovation. Inf Syst Res. 1991;2(3):192–222. doi: 10.1287/isre.2.3.192.
    1. Pickard K, Rowless S, Ingersoll B. Understanding the impact of adaptations to a parent-mediated intervention on parents’ ratings of perceived barriers, program attributes, and intent to use. Autism. 2019;23(2):338–349. doi: 10.1177/1362361317744078.
    1. Rogers EM. Diffusion of innovations. New York: Free Press; 2003. p. 551.
    1. Guimond AB, Wilcox MJ, Lamorey SG. The early intervention parenting self-Efficacy Scale (EIPSES) scale construction and initial psychometric evidence. J Early Interv. 2008;30(4):295–320. doi: 10.1177/1053815108320814.
    1. Ingersoll B, Dvortcsak A. Teaching social communication to children with autism: a practitioner's guide to parent training and a manual for parents. New York: Guilford Press; 2009.
    1. Wainer AL, Berger NI, Ingersoll BR. Brief report: The preliminary psychometric properties of the Social Communication Checklist. J Autism Dev Disord. 2017;47(4):1231–1238. doi: 10.1007/s10803-016-3026-8.
    1. Park J, Hoffman L, Marquis J, Turnbull AP, Poston D, Mannan H, et al. Toward assessing family outcomes of service delivery: validation of a family quality of life survey. J Intellect Disabil Res. 2003;47(4–5):367–384. doi: 10.1046/j.1365-2788.2003.00497.x.
    1. Hoffman L, Marquis J, Poston D, Summers JA, Turnbull A. Assessing family outcomes: psychometric evaluation of the beach center family quality of life scale. J Marriage Fam. 2006;68(4):1069–1083. doi: 10.1111/j.1741-3737.2006.00314.x.
    1. Davis FD. Perceived usefulness, perceived ease of use, and user acceptance of information technology. MIS Q. 1989;13:319–340. doi: 10.2307/249008.
    1. Gagne RM, Wager WW, Golas KC, Keller JM, Russell JD. Principles of instructional design. Perform Improv. 2005;44(2):44–46. doi: 10.1002/pfi.4140440211.
    1. Liu S-H, Liao H-L, Pratt JA. Impact of media richness and flow on e-learning technology acceptance. Comput Educ. 2009;52(3):599–607. doi: 10.1016/j.compedu.2008.11.002.
    1. Minjarez MB, Mercier EM, Williams SE, Hardan AY. Impact of pivotal response training group therapy on stress and empowerment in parents of children with autism. J Posit Behav Interv. 2013;15(2):71–78. doi: 10.1177/1098300712449055.
    1. Rush DD, M'Lisa LS, Hanft BE. Coaching families and colleagues: a process for collaboration in natural settings. Infants Young Child. 2003;16(1):33–47. doi: 10.1097/00001163-200301000-00005.
    1. Morley S, Dowzer C. Manual for the Leeds reliable change indicator: simple excel® applications for the analysis of individual patient and group data. Leeds: University of Leeds; 2014.
    1. Rivard M, Terroux A, Parent-Boursier C, Mercier C. Determinants of stress in parents of children with autism spectrum disorders. J Autism Dev Disord. 2014;44(7):1609–1620. doi: 10.1007/s10803-013-2028-z.
    1. Michie S, Yardley L, West R, Patrick K, Greaves F. Developing and evaluating digital interventions to promote behavior change in health and health care: recommendations resulting from an international workshop. J Med Internet Res. 2017;19(6):e232. doi: 10.2196/jmir.7126.
    1. Heron KE, Everhart RS, McHale SM, Smyth JM. Using mobile-technology-based ecological momentary assessment (EMA) methods with youth: a systematic review and recommendations. J Pediatr Psychol. 2017;42(10):1087–1107. doi: 10.1093/jpepsy/jsx078.
    1. Karst JS, Van Hecke AV. Parent and family impact of autism spectrum disorders: a review and proposed model for intervention evaluation. Clin Child Fam Psychol Rev. 2012;15(3):247–277. doi: 10.1007/s10567-012-0119-6.
    1. Glanz K, Rimer B. Theory at a glance: a guide for health promotion practice. 2. Bethesda: National Cancer Institute, US Department of Health and Human Services; 2005.
    1. Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci. 2009;4(1):50. doi: 10.1186/1748-5908-4-50.
    1. Bradshaw J, Steiner AM, Gengoux G, Koegel LK. Feasibility and effectiveness of very early intervention for infants at-risk for autism spectrum disorder: a systematic review. J Autism Dev Disord. 2015;45(3):778–794. doi: 10.1007/s10803-014-2235-2.
    1. Siller M, Morgan L. Systematic review of research evaluating parent-mediated interventions for young children with autism: years 2013 to 2015. In: Siller M, Morgan L, editors. Handbook of parent-implemented interventions for very young children with autism. Cham: Springer; 2018. pp. 1–21.
    1. Wallace KS, Rogers SJ. Intervening in infancy: implications for autism spectrum disorders. J Child Psychol Psychiatry. 2010;51(12):1300–1320. doi: 10.1111/j.1469-7610.2010.02308.x.
    1. Chew AMK, Ong R, Lei HH, et al. Digital health solutions for mental health disorders during COVID-19. Front Psychiatry. 2020;11:582007. doi: 10.3389/fpsyt.2020.582007.

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