Promoting early autism detection and intervention in underserved communities: study protocol for a pragmatic trial using a stepped-wedge design
Abstract Background Despite the known benefits of early, specialized intervention for toddlers with Autism Spectrum Disorder (ASD), access to such intervention remains limited. This pragmatic trial examines a novel healthcare delivery model (Screen-Refer-Treat [SRT]), which capitalizes upon existing...
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| Format: | Article |
| Language: | English |
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BMC
2019-06-01
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| Series: | BMC Psychiatry |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s12888-019-2150-3 |
| _version_ | 1817989157135319040 |
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| author | Lisa V. Ibañez Ann Vander Stoep Kathleen Myers Chuan Zhou Shannon Dorsey Kyle J. Steinman Wendy L. Stone |
| author_facet | Lisa V. Ibañez Ann Vander Stoep Kathleen Myers Chuan Zhou Shannon Dorsey Kyle J. Steinman Wendy L. Stone |
| author_sort | Lisa V. Ibañez |
| collection | DOAJ |
| description | Abstract Background Despite the known benefits of early, specialized intervention for toddlers with Autism Spectrum Disorder (ASD), access to such intervention remains limited. This pragmatic trial examines a novel healthcare delivery model (Screen-Refer-Treat [SRT]), which capitalizes upon existing health care and early intervention (EI) infrastructure to increase community capacity for ASD detection and treatment before age 3, when it is likely to have the greatest impact. This model comprises three components: (1) universal use of Stage 1 ASD screening by primary care providers (PCPs) at 18-month well-child visits (i.e., Screen); (2) immediate referral of positive screens to a community-based EI program (i.e., Refer); and (3) provision of an inexpensive, evidence-based ASD-specialized treatment by EI providers, after verifying ASD risk with a Stage 2 screen (i.e., Treat). This paper describes our research design and the initial successes, challenges, and adaptations made during the early implementation phase. Method/design A stepped-wedge cluster RCT was used to implement the SRT model sequentially in four diverse Washington State counties (“clusters”). Counties are randomly assigned to the time of receipt of the SRT intervention, which comprises training workshops and technical assistance focused on the use of evidence-based ASD screening and intervention tools. Separate cohorts of families with toddlers (16–35 months old) with and without ASD concerns are recruited before and after the SRT intervention from participating PCP practices and EI programs. PCPs and EI providers complete measures on their screening, referral, and intervention practices before and after the SRT intervention. Each family cohort completes surveys about their well-being, parenting efficacy, health care satisfaction, and toddler’s social-communicative behaviors. Conclusion This trial is the first of its kind to work simultaneously with two service delivery systems with the goal of improving early detection and treatment for ASD. Our approach was successful in attaining buy-in from PCPs and EI providers, building and maintaining partnerships with providers, and achieving high levels of retention and survey completion. Fostering provider engagement and problem-solving issues together as partners were integral to overcoming the main challenges. Numerous lessons have been learned thus far, which have applicability for implementation researchers in ASD and those in other fields. Trial registration The registration number for this trial is NCT02409303 and it was posted on ClinicalTrials.gov on April 6, 2015. |
| first_indexed | 2024-04-14T00:43:26Z |
| format | Article |
| id | doaj.art-98af21f73aab43f8818f6ecb658b90d4 |
| institution | Directory Open Access Journal |
| issn | 1471-244X |
| language | English |
| last_indexed | 2024-04-14T00:43:26Z |
| publishDate | 2019-06-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Psychiatry |
| spelling | doaj.art-98af21f73aab43f8818f6ecb658b90d42022-12-22T02:22:07ZengBMCBMC Psychiatry1471-244X2019-06-0119111310.1186/s12888-019-2150-3Promoting early autism detection and intervention in underserved communities: study protocol for a pragmatic trial using a stepped-wedge designLisa V. Ibañez0Ann Vander Stoep1Kathleen Myers2Chuan Zhou3Shannon Dorsey4Kyle J. Steinman5Wendy L. Stone6Department of Psychology, University of Washington, CHDDDepartment of Psychiatry and Behavioral Sciences, Department of Epidemiology, University of WashingtonDepartment of Psychiatry and Behavioral Sciences, University of WashingtonDepartment of Pediatrics, School of Medicine, University of WashingtonDepartment of Psychology, University of Washington, CHDDDepartments of Neurology, Psychiatry & Behavioral Sciences, and Pediatrics, University of WashingtonDepartment of Psychology, University of Washington, CHDDAbstract Background Despite the known benefits of early, specialized intervention for toddlers with Autism Spectrum Disorder (ASD), access to such intervention remains limited. This pragmatic trial examines a novel healthcare delivery model (Screen-Refer-Treat [SRT]), which capitalizes upon existing health care and early intervention (EI) infrastructure to increase community capacity for ASD detection and treatment before age 3, when it is likely to have the greatest impact. This model comprises three components: (1) universal use of Stage 1 ASD screening by primary care providers (PCPs) at 18-month well-child visits (i.e., Screen); (2) immediate referral of positive screens to a community-based EI program (i.e., Refer); and (3) provision of an inexpensive, evidence-based ASD-specialized treatment by EI providers, after verifying ASD risk with a Stage 2 screen (i.e., Treat). This paper describes our research design and the initial successes, challenges, and adaptations made during the early implementation phase. Method/design A stepped-wedge cluster RCT was used to implement the SRT model sequentially in four diverse Washington State counties (“clusters”). Counties are randomly assigned to the time of receipt of the SRT intervention, which comprises training workshops and technical assistance focused on the use of evidence-based ASD screening and intervention tools. Separate cohorts of families with toddlers (16–35 months old) with and without ASD concerns are recruited before and after the SRT intervention from participating PCP practices and EI programs. PCPs and EI providers complete measures on their screening, referral, and intervention practices before and after the SRT intervention. Each family cohort completes surveys about their well-being, parenting efficacy, health care satisfaction, and toddler’s social-communicative behaviors. Conclusion This trial is the first of its kind to work simultaneously with two service delivery systems with the goal of improving early detection and treatment for ASD. Our approach was successful in attaining buy-in from PCPs and EI providers, building and maintaining partnerships with providers, and achieving high levels of retention and survey completion. Fostering provider engagement and problem-solving issues together as partners were integral to overcoming the main challenges. Numerous lessons have been learned thus far, which have applicability for implementation researchers in ASD and those in other fields. Trial registration The registration number for this trial is NCT02409303 and it was posted on ClinicalTrials.gov on April 6, 2015.http://link.springer.com/article/10.1186/s12888-019-2150-3Autism Spectrum DisorderEarly detectionPreventive interventionUniversal screeningStage 2 screeningPragmatic trial |
| spellingShingle | Lisa V. Ibañez Ann Vander Stoep Kathleen Myers Chuan Zhou Shannon Dorsey Kyle J. Steinman Wendy L. Stone Promoting early autism detection and intervention in underserved communities: study protocol for a pragmatic trial using a stepped-wedge design BMC Psychiatry Autism Spectrum Disorder Early detection Preventive intervention Universal screening Stage 2 screening Pragmatic trial |
| title | Promoting early autism detection and intervention in underserved communities: study protocol for a pragmatic trial using a stepped-wedge design |
| title_full | Promoting early autism detection and intervention in underserved communities: study protocol for a pragmatic trial using a stepped-wedge design |
| title_fullStr | Promoting early autism detection and intervention in underserved communities: study protocol for a pragmatic trial using a stepped-wedge design |
| title_full_unstemmed | Promoting early autism detection and intervention in underserved communities: study protocol for a pragmatic trial using a stepped-wedge design |
| title_short | Promoting early autism detection and intervention in underserved communities: study protocol for a pragmatic trial using a stepped-wedge design |
| title_sort | promoting early autism detection and intervention in underserved communities study protocol for a pragmatic trial using a stepped wedge design |
| topic | Autism Spectrum Disorder Early detection Preventive intervention Universal screening Stage 2 screening Pragmatic trial |
| url | http://link.springer.com/article/10.1186/s12888-019-2150-3 |
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